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From: Victor S. Miller on 7 Jul 2006 16:19 >>>>> "Norm" == normc <norm-c(a)socal.rr.com> writes: Victor> And how in the world can I get used to CPAP when it's so Victor> damned uncomforable? I really think that I need some alternative Victor> (and NOT UPPP!). Victor Norm> From Stanford Norm> http://www.stanford.edu/~dement/apnea.html Norm> TRACHEOSTOMY The only available treatment until the early 1980's Norm> was a tracheostomy. A tracheostomy is a surgical procedure where Norm> a small hole is cut in the neck and a tube with a valve is Norm> inserted into the hole. During the day the valve is closed so Norm> the person can speak. At night, the valve is opened, thus Norm> avoiding the obstructions. This procedure is only used today as Norm> a last resort or to avoid respiratory distress, or other serious Norm> medical complications (You would have to be extremely sick to Norm> require this). Norm> UVULOPALATOPHARYNGOPLASTY (UPPP) What is available today in the Norm> way of surgery is the uvulo-palato-pharyngoplasty (UPPP). What Norm> does this mean? The uvulo refers to the uvula, that fleshy thing Norm> hanging in the back of your throat, palato refers to the palate, Norm> and pharyngoplasty means plastic surgery of the pharynx (the Norm> pharynx is the joint opening of the gullet and the Norm> windpipe). The uvula is removed along with excess tissue. This Norm> surgery is usually done for patients who can't tolerate nasal Norm> CPAP. This surgery has mixed reviews, it helps in around 50% who Norm> have the surgery and in others it does not help at all or it Norm> helps only partially and the patient may still need to use the Norm> C-PAP machine due to scar tissue. Neither of those are acceptable. What about oral appliances? Unfortunately, the advice that I seem to be getting about CPAP is to "tough it out" -- eventually you won't notice the annoying pressure, noise, blowing air (is that a feature of the "Standard Res Med Activa" mask -- there was a point just below where the tube was joined to the mask that was blowing out a steady stream of air. Was that supposed to be there?), or dryness. Yuck! It's amazing to me that anyone gets used to CPAP. Victor
From: normc on 7 Jul 2006 16:40 Victor S. Miller wrote: >>>>>>"Norm" == normc <norm-c(a)socal.rr.com> writes: > > > Victor> And how in the world can I get used to CPAP when it's so > Victor> damned uncomforable? I really think that I need some alternative > Victor> (and NOT UPPP!). Victor > > Norm> From Stanford > > Norm> http://www.stanford.edu/~dement/apnea.html > > Norm> TRACHEOSTOMY The only available treatment until the early 1980's > Norm> was a tracheostomy. A tracheostomy is a surgical procedure where > Norm> a small hole is cut in the neck and a tube with a valve is > Norm> inserted into the hole. During the day the valve is closed so > Norm> the person can speak. At night, the valve is opened, thus > Norm> avoiding the obstructions. This procedure is only used today as > Norm> a last resort or to avoid respiratory distress, or other serious > Norm> medical complications (You would have to be extremely sick to > Norm> require this). > > Norm> UVULOPALATOPHARYNGOPLASTY (UPPP) What is available today in the > Norm> way of surgery is the uvulo-palato-pharyngoplasty (UPPP). What > Norm> does this mean? The uvulo refers to the uvula, that fleshy thing > Norm> hanging in the back of your throat, palato refers to the palate, > Norm> and pharyngoplasty means plastic surgery of the pharynx (the > Norm> pharynx is the joint opening of the gullet and the > Norm> windpipe). The uvula is removed along with excess tissue. This > Norm> surgery is usually done for patients who can't tolerate nasal > Norm> CPAP. This surgery has mixed reviews, it helps in around 50% who > Norm> have the surgery and in others it does not help at all or it > Norm> helps only partially and the patient may still need to use the > Norm> C-PAP machine due to scar tissue. > > Neither of those are acceptable. What about oral appliances? > Unfortunately, the advice that I seem to be getting about CPAP is to > "tough it out" -- eventually you won't notice the annoying pressure, > noise, blowing air (is that a feature of the "Standard Res Med Activa" > mask -- there was a point just below where the tube was joined to the > mask that was blowing out a steady stream of air. Was that supposed > to be there?), or dryness. Yuck! It's amazing to me that anyone gets > used to CPAP. > > Victor Over the years, I've concluded that the amount of roughing it out is purely a function of the individual..... their age, their life experiences, their psychological/psychiatric makeup, how demanding you are, or can be, etc. etc. I felt so lousy from lack of quality sleep, the resulting cognitive deficits, and the resulting depression, that my apnea was life threatening, not from a potential stroke or heart attack, but from the suicidal depression. For me, he only thing worse than lack of quality sleep is pain..... and I've had more than my share of that. Death would have been a relief in either case. A properly fitting mask, especially for titration, is an absolute necessity to avoid your kind of bad exerience. But first you have to have a knowledgeable, caring sleep lab staff. A mask not only has to be properly fitted, but it has to be adjusted properly. From what you describe, the first mask was clearly the wrong size. I would demand another titration, but not until you are properly sized and fitted for a titration mask. HTH
From: David Ruether on 7 Jul 2006 18:14 "Victor S. Miller" <victor(a)algebraic.org> wrote in message news:m37j2p9nh3.fsf(a)algebraic.algebraic.org... [...] > Unfortunately, the advice that I seem to be getting about CPAP is to > "tough it out" -- eventually you won't notice the annoying pressure, > noise, blowing air (is that a feature of the "Standard Res Med Activa" > mask -- there was a point just below where the tube was joined to the > mask that was blowing out a steady stream of air. Was that supposed > to be there?), or dryness. Yuck! It's amazing to me that anyone gets > used to CPAP. > > Victor You should not have "annoying pressure" unless your prescribed pressure is near 20 (you can use a "Bi-PAP" or "Auto-PAP" to relieve this), or, the strap tension is excessive due to improper fitting of the mask (and there are alternatives to masks, as AH pointed out). Noise should be minimal with recent blowers and masks. Masks must blow out CO2, so there is an exhaust stream, but turning the direction of input of the hose often turns the vent with it, and directing the vent away from surfaces reduces the noise considerably. Almost everyone finds that they need a heated humidifier in the air path to avoid dryness (air leakage will also result in dryness). After being dry a couple of weeks, ask the doctor for a prescription for the heated humidifier - then the insurance generally covers it, but not before for some unknown reason. And, hey, stop kvetching and start doing what you need to do to make it work - you WILL feel better and be healthier! ;-) I currently use the Activa with a Conjo hose insulator (to prevent "rain-out" - fun! ;-), mouth taped with wide masking tape (I'm a "mouth breather", the tape doesn't stick very well so it's not too dangerous), and the hose run up behind a pillow on its edge above my head so the hose comes from above (that pillow is held in place by my regular pillow). I can turn in any way but onto my stomach. Sure, there are times I wish I could throw my CPAP gear out the window, but I don't 'cuz I REALLY know what it does for me! --David Ruether
From: Victor S. Miller on 7 Jul 2006 23:11 >>>>> "David" == David Ruether <rpn1(a)no-junk.cornell.edu> writes: David> And, hey, stop kvetching and start doing what you need to do to David> make it work - you WILL feel better and be healthier! ;-) I Since you're implying that you know specific steps, perhaps you could enlighten me. David, I've been feeling rather cranky today, but, seriously I get the feeling that I'm flailing around in the dark. How was I supposed to know that the masks were fitted badly? I did complain/ask about the pressure and was told that that was the way it has to be. Are all sleep centers this bad? How can I be sure of finding one that knows what they are doing? They have two diplomated sleep doctors there. Obviously that's not sufficient. I wish I knew why I find it difficult/next to impossible to have anything approaching a normal night's sleep in the sleep center. The whole "million" wires and bands around chest stomach, etc. etc. is something I find rather intrusive. Unfortunately the sleep doctor was unwilling to make any attempt to make things better for me. I'm sure that CPAP works well for some people (I have a good friend who uses it -- he went to the same sleep clinic as I did -- he ended his first study at 2am when he couldn't get to sleep. For the next study they gave him an ambien, and he was out. When I asked, they refused.), but if I can't get things fitted properly I don't think that I have much of a chance with it. All these studies have been doing is running up big bills for my insurance company. I'm going to write a rather pointed letter to the head of the sleep center with copies to the president of the hospital, and possibly my insurance company. I'm rather pissed off. Victor PS. As I've said previously -- I have a CPAP sitting in my closet I haven't used in 10 years. I was never titrated, and was given a mask after a tech tried a few sizes and settled on one. I tried for 6 months -- after lying awake for 3 or 4 hours each night I would take off the mask and shut off the CPAP so I could get SOME sleep. It never got any better. I kept fiddling with straps, etc. After 6 months I gave up -- some sleep -- no matter how bad -- is better than none.
From: Santa Steve on 8 Jul 2006 09:05
The problem with most sleep clinics and sleep specialists/Doctors/Nurses is that they don't need CPAP and don't use it so really have no idea what is normal I have found that after 2 months on CPAP I know more about the mechanics of mask fitting etc than the experts Santa Steve "Victor S. Miller" <victor(a)algebraic.org> wrote in message news:m3ejwwrdt3.fsf(a)algebraic.algebraic.org... >>>>>> "David" == David Ruether <rpn1(a)no-junk.cornell.edu> writes: > > David> And, hey, stop kvetching and start doing what you need to do to > David> make it work - you WILL feel better and be healthier! ;-) I > > Since you're implying that you know specific steps, perhaps you could > enlighten me. > > David, I've been feeling rather cranky today, but, seriously I get the > feeling that I'm flailing around in the dark. How was I supposed to > know that the masks were fitted badly? I did complain/ask about the > pressure and was told that that was the way it has to be. Are all > sleep centers this bad? How can I be sure of finding one that knows > what they are doing? They have two diplomated sleep doctors there. > Obviously that's not sufficient. I wish I knew why I find it > difficult/next to impossible to have anything approaching a normal > night's sleep in the sleep center. The whole "million" wires and > bands around chest stomach, etc. etc. is something I find rather > intrusive. Unfortunately the sleep doctor was unwilling to make any > attempt to make things better for me. I'm sure that CPAP works well > for some people (I have a good friend who uses it -- he went to the > same sleep clinic as I did -- he ended his first study at 2am when he > couldn't get to sleep. For the next study they gave him an ambien, > and he was out. When I asked, they refused.), but if I can't get > things fitted properly I don't think that I have much of a chance with > it. All these studies have been doing is running up big bills for my > insurance company. I'm going to write a rather pointed letter to the > head of the sleep center with copies to the president of the hospital, > and possibly my insurance company. I'm rather pissed off. > > Victor > > PS. As I've said previously -- I have a CPAP sitting in my closet I > haven't used in 10 years. I was never titrated, and was given a mask > after a tech tried a few sizes and settled on one. I tried for 6 > months -- after lying awake for 3 or 4 hours each night I would take > off the mask and shut off the CPAP so I could get SOME sleep. It > never got any better. I kept fiddling with straps, etc. After 6 > months I gave up -- some sleep -- no matter how bad -- is better than > none. |