I absolutely agree that there are junk cpap forums. On 1, I was told STFU because they didn't think my question was valid. Obviously, we have to make our own decisions about what advice from doctor or otherwise.
"The sleep doc who writes the prescription does this for a living and likely is better educated and exerpeiced than folks on a message forum."
One would think so, but I struggled for almost a year with nothing but BS from doctor . . . basically, "strap this contraption on your face and everything will be all better". "I'm the expert; just do as I say". Didn't work that way. Night after night (almost a year) of little or no sleep and problems worse than before my initial visit. Drawing conclusions from another forum, to my specific questions, I changed to variable pressure, which immediately produced a completely new world for me. I used that setting for a couple of weeks, until my next doctor's appointment. As I said, she seemed completely flabbergasted . . . 1) that I had been able changed the settings (which she had previously stated flatly could only be changed remotely) . . . 2) that the new settings had produced results far superior to anything that she had tried. Believe me, she had tried several (all over the ballpark).
Don't get me wrong. I agree that we go to doctors because they are the "experts". However, when their expert advice is clearly not working, we shouldn't just blindly follow.
The supplied "user's manual" for my Philips REMstar System One 560 series Auto Aflex is woefully inadequate. Everyone (doctor/supplier/Philips) always says, "I don't have (or am not allowed to provide) that information". I had to go online for info about changing my pressure settings, which I did with various forums' suggestions. My doctor was very surprised that I was able to do that & I could tell wanted to ask how, but that would have shown her lack of knowledge. She didn't ask & I didn't tell . . . but she decided, "we'll try those new settings & see how they work out". Still using after 16 months.
Does anyone know where I can get an "in depth" manual for this machine?
I've been browsing around the internet; YouTube, etc. Of course, I don't really have a way of separating fact from fiction. I also have no way of knowing if my equipment is the latest technology or not. For instance, the heated tubing feature (per a YouTube) has been out since 2012. I got my cpap in May 2015. I don't have a heated tube. I'm wondering, why not? There was no discussion at all with me about options/features/cost/etc. Nothing was said, like "you have a mild/severe case & need (or don't need) such & such equipment. Only, "you have sleep apnea & need a cpap machine". I have Medicare & good secondary insurance, so I wasn't very concerned about cost. Dr said that equipment will be delivered to my home; nothing about choices of type mask or anything else. They delivered. There was very little demo, and that was that. Was heated tubing a choice? Do I need one? I don't know. If so, & I doubt that it was, I had no basis for making a choice.
I feel that I've been kept in the dark for months. What could possibly be the reason for not supplying the latest equipment? More profit? Medicare restrictions? An equipment "representative" (not my supplier) that I spoke to several times in my doctor's office seemed surprised that I didn't have a heated tube.
I talked to my doctor's office a few days ago (not the doctor herself) & was told that maybe a heated tube will be prescribed at my next appointment (3-11-16) "after we see how a chinstrap works out". Regardless of the fact that my cpap experiences have been better for the last few nights (even tho' the chinstrap has not arrived) are there any reasons that I shouldn't insist on a heated tube (and any other equipment upgrades)? I think I've seen a replacement schedule (somewhere/sometime) that says 5 years for cpap machine replacement. Am I locked in with what I have now, for another 4+ years?
"In the beginning" my doctor seemed very impressed that I was stubbornly strapping up & suffering every single night. She even said that maybe I should give a little motivational speech to her "cpap users group". She hasn't repeated that remark since I have become more impatient & more vocal with my complaints. I found & contacted a local A.W.A.K.E. group. Lo & behold, they meet at my doctor's office.
Thanks, so much for the quick replies.
wiredgeorge, I think I've just about reached the same conclusion as you . . . I may have hired the wrong person. I want to get a replacement before dropping this doctor. Selecting a new doctor isn't a simple task. I initially thought this doctor was "the one", because she took time & it wasn't in & out in 15 minutes. Looking back, much/most of the time was trying to convince me that CPAP was the answer. I resisted for about a year, because all that I had heard were horror stories. Then I learned that my brother used CPAP & was happy as a lark. My supplier was Medicare's low bidder. There's always an "equipment person" in the doctor's office when I visit. I gather that his company which, lost the Medicare bid, is for non-Medicare (more profitable) patients. My initial equipment delivery was by someone from Baltimore (50 miles away). Now supplies are handled by a Santa Fe company. My doctor gave me the phone# of a person at the local sleep lab for equipment questions, but I don't really know enough to know what to ask.
Will wonders never cease . . . I just now (as I was typing this) received a return call from my doctor's office. They were closed when I called a couple of days ago, because of a snow storm. Long story short . . . she has checked (with Baltimore) & my chinstrap has been shipped (from somewhere). Changing from the Santa Fe supplier can/will be discussed with the doctor at my next appointment in 3 weeks. I also learned that there are "a couple" of local walk-in outlets for supplies. That seems like a no-brainer decision.
Thanks for your explanation of how things work. On another online forum, I was ridiculed by some for asking the "wrong" questions. I should stop being ignorant, arrogant, etc & just listen to their "experts". Actually, that's why I mentioned my specific CPAP equipment. They told me they can't "adequately" answer my questions w/o that info. Obviously, that's true for some specific questions, but not for very general questions.
My humidifier is set to 5 (max). Dr's office said on today's phone call that maybe I'll be changed to a heated tube; based upon how the chinstrap works out.
C-flex+ = 2 in setup . . . I can change it (to 1 or 3). At least, it changes when I turn the know. I don't know if it would stay changed. I left it at 2.
I noticed this morning when I awoke, several hours early, that the pressure was very, very low . . . much lower than the beginning ramp pressure of 4. I also noticed that I was taking very short, shallow breaths. I've noticed this low pressure a number of times before.
I agree that it's important to monitor my treatment. That's why I get my numbers form DreamMapper/SleepMapper and put them into a spreadsheet so that I can see several weeks on one screen. Altho' in one glaring instance DreamMapper's Mask Fit Time & % "did not compute" with their Leak Time & % for a specific date. Their customer service didn't understand simple arithmetic & finally referred it to their "engineering" department. I'm still waiting for their reply.
My supplier told me in an e-mail, " I cannot continue to send you reports due to confidentiality". I don't understand that at all . . . after all, it's MY data.
On a small side note . . . I thought I saw when I posted this thread, that I was automatically "subscribed" & would get e-mail notifications when replies are posted. I didn't receive a notification. Do I need to set a preference somewhere?
From the beginning, I've been pretty well kept in the dark about my CPAP therapy. I think my sleep apnea is "mild". My original complaint was insomnia. I was more or less told (over 8 months ago), "put this contraption on your face & everything will be all better". When my CPAP machine was delivered & I asked about controls &/or settings, she brushed me off with, "you don't need to know about those". She asked what type mask I wanted & I said full face, only because my brother recommended. No options were given I can't believe that, in my nativity, I accepted all that.
For 6 months I continually fought various problems, w/o any real solutions/suggestions from my doctor. Then I went on a 3 week trip & for many legitimate reasons, could/did not take my CPAP. Upon my return, suddenly everything seemed to fall into place. I have no idea why. I was sleeping better, awakening more rested, etc.
I "follow my numbers" on MySleepMapper.com. I noticed that about a month after the trip, my AHI, total central apneas, total obstructive apneas and total hypopneas seemed to be "all over the ballpark", while my mask fit was almost always 100%. Reasoning that fewer apneas (not good mask fit) was the objective, I made an appointment to discuss it with my doctor. Her short (ie, irritated) answer was, "OK, I'll have them increase your pressure from 8 to 11". It seems strange to me that she can't change it herself. In fact, I should be able to change it myself, altho' I would need a better understanding of the mechanics before doing so.
How does my REMstar System One 560 series Auto Aflex with humidifier work? It has never been explained to me (even online), except that CPAPs "provide pressure to keep airways open". (What, briefly, are the mechanics . . . fuel is injected into the cylinder; the sparkplug fires, etc) My CPAP starts at 4 and ramps 20 minutes to ?? It has been my understand that ramp started at 50% & went to max in 20 minutes. Does the pressure automatically fluctuate "as needed"? C-flex is on. Pressure usually is much less when I wake up during the night or in the morning than when first turned on at night. What is the 11 pressure? Is that the max?
My "apnea numbers" have dropped since increasing the pressure. But mask fit has gone from 99% 14-day average immediately before the increase to 77% in the following 14-day period. That would be fine with me (after all, lessening apneas is the goal, right?), but the comfort level has gone to hell. My dry mouth is actually painful sometimes when I wake up. I have a chin strap on order & I've worn a cervical collar for a couple of nights & that helps somewhat.
On top of all that, after my DME could not even find me in their system (so that I could order the chin strap), I was so irritated (that's a byproduct of sleep apnea, isn't it?) that I sent an irate e-mail to my doctor. That was 2 days ago & I haven't heard from her.
I've located a nearby A.W.A.K.E. group that I plan to contact. Maybe some face-to-face-real-live-people interaction will ease some of my frustration.
My original complaint was insomnia. After a sleep study, she recommended CPAP, sounding as it was a cure all for all sleep related problems. I resisted (actually, refused) CPAP because I had only heard "horror stories". I even tried things like tennis balls to prevent my sleeping on my back. Insomnia & sleepiness during the day were still big problems. After about a year, I learned that my brother had used CPAP for several years & recommended it highly. So I decided to give it a try.
My introduction was "inadequate", to say the least. Doctor gave very little info, except "you'll be contacted & equipment will be delivered to you." Equipment was delivered, but no instructions; no fitting of mask, etc. After several follow up doctor visits & trying several different kinds/sizes of masks & headgear, I decide a (large) full face mask was best. I emphasize "I" decided. No one provided much guidance other than try this; try that, etc . . . never much evaluation of how/if it was changing my "numbers". Very important (to me) was an explanation of those numbers; their meaning; acceptable ranges, etc. Explaining the importance of mask fit wasn't necessary, because I was having irritating dry eyes, mouth, etc. I was also surprised when I was told that Ramp Time & Humidity were the only 2 settings that I could change . . . especially considering the fact that my next doctor's appointment was 9 months away.
After about 6 months of miserable nightly use, I took a 3 week trip . . . w/o my CPAP. Upon returning (mid-Nov 2016), suddenly & miraculously, my mask fit was comfortable & I was sleeping thru the night. What a pleasant surprise!!! After a couple of weeks, I started gathering my "numbers" from MySleepMapper.com . The literature that I had received "way back when" stated that high mask fit was good, but "will rarely be 100%". My mask fit was in high 90's. It has been 100% for 25 of the last 26 nights. I was concerned/confused about the numbers & variations for AHI, Central Apneas, Obstructive Apneas & Hyponeas, which seemed (to me) to be all over the ballpark. Was something wrong? My "supplier" seemed as ignorant as I about the meanings of these numbers. Incidentally, they seem only interested in selling/sending more supplies.
I found another CPAP forum (which I'll not name) to which I posted that I was loading MySleepMapper numbers into a spreadsheet. They seem sold on Sleepyhead software. Several posts were very critical of me, calling me arrogant, know it all, refusing to listen, etc, after I asked (what I thought were) legitimate questions (mostly about Sleepyhead). I'm counting on this forum being different.