Can I have my own thread?
- Sleepy Taz
- Posts: 252
- Joined: Tue May 19, 2009 9:27 am
- Location: Illinois
Re: Can I have my own thread?
RobySue,
People who have other disorders such as restless leg syndrome do not destat as well but because of the arousals loose sleep much like an Apnea patient. My 15 year old daughter has a sleep problem and is always tired and I am sure it is restless leg syndrome. Whenever one of her friends sleeps over they complain about her kicking and moving around in the bed. Many nights I have stayed up and watched her sleep and she never stops breathing but does spend a lot of time moving around. The doctor believed she was Bipolar and tried sleep meds which only worsened the symptoms. So in answer to your question; yes a cpap can be beneficial even if your blood oxygen levels stay above 90. Without proper sleep a person is subject to many ailments that will alter their lives until it is corrected. You may be saving yourself from years of misery by starting now before the main problem rears its ugly head.
People who have other disorders such as restless leg syndrome do not destat as well but because of the arousals loose sleep much like an Apnea patient. My 15 year old daughter has a sleep problem and is always tired and I am sure it is restless leg syndrome. Whenever one of her friends sleeps over they complain about her kicking and moving around in the bed. Many nights I have stayed up and watched her sleep and she never stops breathing but does spend a lot of time moving around. The doctor believed she was Bipolar and tried sleep meds which only worsened the symptoms. So in answer to your question; yes a cpap can be beneficial even if your blood oxygen levels stay above 90. Without proper sleep a person is subject to many ailments that will alter their lives until it is corrected. You may be saving yourself from years of misery by starting now before the main problem rears its ugly head.
"I can't do anything about the past. I have no idea what will happen tomorrow. What matters is the present. And, just in case tomorrow should never come, I'm going to use the present as constructively as I can."
- SleepingUgly
- Posts: 4690
- Joined: Sat Nov 28, 2009 9:32 pm
Re: Can I have my own thread?
Sleepy Taz, actually I gave away an Opus 360 that was rough on my nostrils. I had hoped that by taking off a few days I could avoid the hard-to-get-rid-of sores, but apparently even with that, just a few hours on the pillows started another sore going. I'm talking to my ENT about what product to use to help with that. I think pillows are my best crack at comfortable CPAP use and the least leaks, and I have two types of masks that I'll try to work on. I'm not sure if I just need some period of toughening my skin... Does anyone know if my "callous theory" holds any water?
I haven't heard anything to suggest that one necessarily begins to desaturate eventually. I was told thin people tend to desaturate less (obviously I'm sure there are exceptions to this), which is why some doctors take issue with the AASM recommended scoring of hypopneas requiring desaturations, and prefer a more liberal scoring such as associations with arousals, etc.
BTW, I have heard of "localized" damage that can occur due to snoring. I can't remember if you snore or not.
How far away are you from Dr. Avram Gold? If I were you, I would consider a consult with him and ask these questions. He mentioned on the teleseminar that he believes in treating FLs even in the absence of arousals, so that's a very conservative position. I just don't know if he does that only in symptomatic patients (e.g., EDS or functional somatic syndromes) or even if a patient was completely asymptomatic (and not sure you qualify) prior to CPAP. He has that limbic system theory about the functional somatic syndromes, so a question for him would be whether he thinks there is a consequence to the brain (about which my doc said we know little) to not treating, even in the absence of symptoms, and how much evidence is there to support that. You could even shoot him an email. He provided his email address on that teleseminar.
I have FFMs, but was not successful with them--bad facial landscape for FFMs apparently. I have an Activa LT that I'll consider if I can't proceed with pillows.Bright Choice wrote:Do you have a ffm that would work as a backup when nares are sore?
I don't know, but I don't think so. I think some people are prescribed a pressure that is sufficient to eliminate FLs as well as hypopneas and apneas. But, as I said, I'd be afraid in your case to recommend that you increase the pressure because of your centrals (and my lack of knowledge about them). If you didn't have them, you'd be on course to do what I'm going to be doing, which is to experimentally bump up your pressure to see if eliminating FLs improves your daytime symptoms.Would it be true that everyone needs to "conquer" a UARS component even after getting AHI under control?
Great! Well, in the interest of science and the greater good, after you've established a consistent baseline for this (say a couple weeks), how about reintroducing each of those elements one at a time to see what impact it has on you? I'm half-joking, as clearly if you're feeling better, you won't care which it is. On the other hand, hypothetically, what if it was just the neti pot that helped and you don't need a PPI?I believe that the above protocol plus not eating anything 3-4 hours before bedtime has helped me tremendously. I never would have thought that nasal breathing or reflux was a problem for me, but now that I have learned more and have done some experimenting I can see that those two components of therapy are more important than I ever understood.
I think I asked this question in YOUR thread! What *I* was told about OSA in the presence of no desaturations and whether I need to be treated is that the known cardiovascular risks are associated with desaturating, we don't know much about the brain, and the rest is quality of life: EDS, depression, anxiety, etc. So I'm on it to improve the quality of my life. I don't know why you're on it. I asked you that and it seemed you had been told differently by your doctor, as well as you felt it was helping your headaches, joint pain, etc. I'd have to reread what it is that your doctor said.robysue wrote:I ask this as another person who does NOT desaturate according to my diagnostic test: What exactly is the medical reason for prescribing xPAP to folks who have obstructive apneas and hypopneas but whose apneaic events are NOT associated with oxygen desaturations? Or do the numerous arousals in and by themselves pose a health risk the way the O2 desats do? I ask these questions sincerely: Is there a known valid medical reason? Or is it just CYA? In other words, do the docs just assume that we will eventually start to desaturate someday in the (possibly far) future? Is there any "proof" that we will eventually start to desat? Is there actually a good medical reason for insisting that someone with moderate apnea based on AHI or RDI but with few or no daytime symptoms and NO O2 desats use xPAP---even when the attempt to adjust to xPAP triggers a significant DECREASE in quality of life?
I haven't heard anything to suggest that one necessarily begins to desaturate eventually. I was told thin people tend to desaturate less (obviously I'm sure there are exceptions to this), which is why some doctors take issue with the AASM recommended scoring of hypopneas requiring desaturations, and prefer a more liberal scoring such as associations with arousals, etc.
And I would never want to be a catalyst in encouraging you not to use your machine. If I were in your situation, I would read everything I could get my hands on and consult other highly reputable doctors about the long-term implications of not treating OSA without desaturations. IF the information were to suggest that there are no health risks for not treating it, then I would do a cost benefit analysis to figure out whether the benefits I'd gained from CPAP outweighed the costs. Personally (and I mean personally), I would be hard pressed to induce in myself the quality of life I have undergone for the past couple of decades without a good reason for doing so. Obviously if there were known risks to me for not treating, that would be another story. I can't help much with this because I haven't researched this topic, as I have the quality of life incentive. That said, because of what I was told, because I don't have that fear of major health risks hanging over my head (or if they are hanging, I haven't heard that they are hanging), so I have the luxury of taking off a few days when my nose is painful and inflamed or I can't stop coughing at night or whatever.Please keep in mind that I am NOT looking for an excuse to ditch my BiPAP (yet). And that I have been 100% compliant right from the start. And that slowly my quality of life is getting back to something approaching what it was before I started this adventure. But I can't say "BiPAP is wonderful because it's made a POSITIVE difference in my life!" I'm still at the stage of using it out of fear: Fear that someday (when I'm 60? 70? 80? 90?) I *might* develop a comorbidity of OSA. And I'm longing for a more positive reason to keep using Kaa, my PR System One BiPAP Auto.
BTW, I have heard of "localized" damage that can occur due to snoring. I can't remember if you snore or not.
How far away are you from Dr. Avram Gold? If I were you, I would consider a consult with him and ask these questions. He mentioned on the teleseminar that he believes in treating FLs even in the absence of arousals, so that's a very conservative position. I just don't know if he does that only in symptomatic patients (e.g., EDS or functional somatic syndromes) or even if a patient was completely asymptomatic (and not sure you qualify) prior to CPAP. He has that limbic system theory about the functional somatic syndromes, so a question for him would be whether he thinks there is a consequence to the brain (about which my doc said we know little) to not treating, even in the absence of symptoms, and how much evidence is there to support that. You could even shoot him an email. He provided his email address on that teleseminar.
_________________
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Rescan 3.10 |
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly
- SleepingUgly
- Posts: 4690
- Joined: Sat Nov 28, 2009 9:32 pm
Re: Can I have my own thread?
RobySue was asking about the hypothetical person that is asymptomatic without CPAP and becomes symptomatic with CPAP. Muffy mentioned on her thread that risk increases when sleep becomes more disrupted, so I'm not sure there is a health benefit to iatrogenically inducing dysfunction via CPAP in someone who was functioning well without CPAP. But that's an empirical question, as is the question of whether one necessarily progresses to develop more serious OSA (e.g., developing desaturations) with more serious health risks over time, holding other variables constant (e.g., weight gain, etc.). For example, can CPAP use now prevent future desaturations? And is there some utility to using CPAP now to prevent a situation that would then require CPAP to treat?Sleepy Taz wrote:So in answer to your question; yes a cpap can be beneficial even if your blood oxygen levels stay above 90. Without proper sleep a person is subject to many ailments that will alter their lives until it is corrected. You may be saving yourself from years of misery by starting now before the main problem rears its ugly head.
Health risks in asymptomatic individuals without desaturations has surely been addressed in the literature. I just don't know this literature.
_________________
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Rescan 3.10 |
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly
Re: Can I have my own thread?
On bad days, I've reached the point where it's hard for me to convince myself that I'm saving myself from "years of misery" when my current sleep-related misery (with CPAP) is far, far greater than ANYTHING I've ever experienced in my whole life (pre-CPAP). And there is no end to my CPAP-induced sleep-related misery anywhere in sight. So on my worst days (and nights), I feel like I have been sentenced to a lifetime of misery caused by this therapy and all the other (non-positive) changes it has forced upon my daily life and my nightly sleep.Sleepy Taz wrote:So in answer to your question; yes a cpap can be beneficial even if your blood oxygen levels stay above 90. Without proper sleep a person is subject to many ailments that will alter their lives until it is corrected. You may be saving yourself from years of misery by starting now before the main problem rears its ugly head.
To be fair, on my more optimistic days and nights, I'm not this gloomy and I'm better able to think of the whole therapy thing on a one-night-at-a-time basis. And not get too overwhelmed by the entirety of having to do xPAP for the rest of my life when I've seen so little positive difference in how I feel and so much negative difference in how I feel on a day-to-day basis. And prior to xPAP, I was, by nature an optimist. But my inherent optimism took a substantial hit last fall along with everything else in my life during the those first four hellish months of therapy. And even now, I have fewer good days than I'd like and more bad days than I'd like to admit to.
So I ask only half facetiously: What's the real point of the docs continuing to insist the patient MUST use xPAP if the OSA patient doesn't have desats and the xPAP itself creates as as many or more problems to the person's overall functioning than the OSA did pre-diagnosis? I'm talking about CPAP creating or increasing problems such as: overall sleep architecture including both an increase in number sleep-distruptive awakenings that you consciously remember and a seeming reduced ability to reach Stage 3 sleep; serious and intractable insomnia; and a severe decline in daytime functioning---brain fog, energy level, severe daytime sleepiness---relative to the daytime functioning prior to starting CPAP.
And a related question from the patient's side: If you don't have desats and xPAP is causing a serious decrease in the quality of your daily life and you've been working HARD on making xPAP work for you and you're compliant for several months, how much longer are you supposed to "be patient" and "keep working on it" before the current decrease in the quality of your daily life becomes chronic enough and severe enough where it is no longer reasonable for the docs, the techs, the DMEs, and anybody else to simply keep parroting the phrases "Be patient, it takes time" and "Keep working on it and it will get better; you'll see."? (And note, when a non-hosehead says "Keep working on it and it will get better, you'll see." to a struggling hosehead who HAS been patient---for MONTHS---and HAS been working on it---for MONTHS---without "it" getting better, it is VERY DISTRESSING AND DEPRESSING instead of comforting.
Sorry for the rant. And sorry for the hijack SU.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
- SleepingUgly
- Posts: 4690
- Joined: Sat Nov 28, 2009 9:32 pm
Re: Can I have my own thread?
Update...
Last few days I've been using the Swift FX for Her with a somewhat uncomfortable chinstrap, which to its credit appears to be doing its job. I added a Padacheek Cozy Barrel cover, and it's been great--leaks are good last few days and it's more comfortable. I'm still having some issues with the comfort of the nasal pillows in/at my nostrils, and there is this tiny flaw in the edge of one of the pillows, which I don't know if it's contributing. But I'm managing the last two days without getting significant sores in my nose (I did have to take it off early last night due to discomfort, though). I'm following my husband's "callous theory", which says that I can't keep going when sores get too bad or I'll be out of commission, but that I must keep going when they aren't too bad so as to toughen up the skin. Last couple of days I've managed that balance.
Also, psychologically I could not hang out a sub-therapeutic pressure of 6 (with an EPR of 0) any longer, so I moved myself up to 7 with an EPR of 1 the last couple of nights. My FLs either look the same or perhaps slightly better than at 6, but still not good (I am not good at reading those, but I know they don't look great). But I'm willing to hang out here for a bit to acclimate, as the last couple of days I've felt a bit better (here's hoping it's related!).
Anyway, that's my update. Thanks for following!
Last few days I've been using the Swift FX for Her with a somewhat uncomfortable chinstrap, which to its credit appears to be doing its job. I added a Padacheek Cozy Barrel cover, and it's been great--leaks are good last few days and it's more comfortable. I'm still having some issues with the comfort of the nasal pillows in/at my nostrils, and there is this tiny flaw in the edge of one of the pillows, which I don't know if it's contributing. But I'm managing the last two days without getting significant sores in my nose (I did have to take it off early last night due to discomfort, though). I'm following my husband's "callous theory", which says that I can't keep going when sores get too bad or I'll be out of commission, but that I must keep going when they aren't too bad so as to toughen up the skin. Last couple of days I've managed that balance.
Also, psychologically I could not hang out a sub-therapeutic pressure of 6 (with an EPR of 0) any longer, so I moved myself up to 7 with an EPR of 1 the last couple of nights. My FLs either look the same or perhaps slightly better than at 6, but still not good (I am not good at reading those, but I know they don't look great). But I'm willing to hang out here for a bit to acclimate, as the last couple of days I've felt a bit better (here's hoping it's related!).
Anyway, that's my update. Thanks for following!
_________________
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Rescan 3.10 |
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly
- BleepingBeauty
- Posts: 2454
- Joined: Thu Apr 02, 2009 5:30 pm
- Location: Aridzona ;-)
Re: Can I have my own thread?
Sounds good, SU! (FWIW, I agree with your hubby. His "callous theory" is on the money.)
Keep us updated.
Keep us updated.
Veni, vidi, Velcro. I came, I saw, I stuck around.
Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy.
)
PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.
Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy.

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.
Re: Can I have my own thread?
Yes you did ask that in my thread. Which I plan to update sometime this week AFTER my scheduled meetings with the neurologist's PA (to discuss depakote, migraines, vertigo and assorted other things) and the sleep doctor's PA (to discuss AHI, insomnia, and assorted other things).SleepingUgly wrote:I think I asked this question in YOUR thread! What *I* was told about OSA in the presence of no desaturations and whether I need to be treated is that the known cardiovascular risks are associated with desaturating, we don't know much about the brain, and the rest is quality of life: EDS, depression, anxiety, etc. So I'm on it to improve the quality of my life. I don't know why you're on it. I asked you that and it seemed you had been told differently by your doctor, as well as you felt it was helping your headaches, joint pain, etc. I'd have to reread what it is that your doctor said.robysue wrote:I ask this as another person who does NOT desaturate according to my diagnostic test: What exactly is the medical reason for prescribing xPAP to folks who have obstructive apneas and hypopneas but whose apneaic events are NOT associated with oxygen desaturations? Or do the numerous arousals in and by themselves pose a health risk the way the O2 desats do? I ask these questions sincerely: Is there a known valid medical reason? Or is it just CYA? In other words, do the docs just assume that we will eventually start to desaturate someday in the (possibly far) future? Is there any "proof" that we will eventually start to desat? Is there actually a good medical reason for insisting that someone with moderate apnea based on AHI or RDI but with few or no daytime symptoms and NO O2 desats use xPAP---even when the attempt to adjust to xPAP triggers a significant DECREASE in quality of life?
And you made a very useful suggestion about trying to figure out why I am in this game. And I've been trying to do that. Not sure I have any real answers yet. But have data that I'll share after those meetings with the PAs. Because one thing that the data may be showing is that the depakote maybe increasing the insomnia. And something seems to be increasing the AHI (marginally, but it's there).
And something (allergies? pollen? rain? depakote? insomnia? other ideas????) is causing havoc with my VSI index: One day it will be < 10 and the next day it will be >50. Or vice versa. Bounces back and forth seemingly at random. Or it will be either very high (>50) for three or four days or very low (<10) for three or four days before suddenly switching. And all of this with me doing absolutely NOTHING different. And except for a possible correlation to aerophagia (because VS's drive EPAP UP to my max), I can't say that I've seen any correlation between VSI and how I feel.
And that's exactly the situation I'm in: I'm thin and have a doc whose lab DEFINITELY scores "hypopneas with arousal" in their own separate little category. Lab doesn't add them to the AHI, but does put them in the RDI. And then the doc makes the diagnosis based on RDI.I haven't heard anything to suggest that one necessarily begins to desaturate eventually. I was told thin people tend to desaturate less (obviously I'm sure there are exceptions to this), which is why some doctors take issue with the AASM recommended scoring of hypopneas requiring desaturations, and prefer a more liberal scoring such as associations with arousals, etc.
Hubby and I are starting to look into this. In a previous lifetime (i.e. job), hubby worked as a computer tech for a group of neurologists, one of whom is board certified in sleep. And we've found out from the DME that she has now left the practice of the guy who is formally my sleep doctor on paper. If it weren't for worrying about losing my working relationship with the PA for the insomnia, I'd be just about ready to "jump" to a different doc to see if I could get some real explanations.And I would never want to be a catalyst in encouraging you not to use your machine. If I were in your situation, I would read everything I could get my hands on and consult other highly reputable doctors about the long-term implications of not treating OSA without desaturations. IF the information were to suggest that there are no health risks for not treating it, then I would do a cost benefit analysis to figure out whether the benefits I'd gained from CPAP outweighed the costs. Personally (and I mean personally), I would be hard pressed to induce in myself the quality of life I have undergone for the past couple of decades without a good reason for doing so. Obviously if there were known risks to me for not treating, that would be another story. I can't help much with this because I haven't researched this topic, as I have the quality of life incentive. That said, because of what I was told, because I don't have that fear of major health risks hanging over my head (or if they are hanging, I haven't heard that they are hanging), so I have the luxury of taking off a few days when my nose is painful and inflamed or I can't stop coughing at night or whatever.Please keep in mind that I am NOT looking for an excuse to ditch my BiPAP (yet). And that I have been 100% compliant right from the start. And that slowly my quality of life is getting back to something approaching what it was before I started this adventure. But I can't say "BiPAP is wonderful because it's made a POSITIVE difference in my life!" I'm still at the stage of using it out of fear: Fear that someday (when I'm 60? 70? 80? 90?) I *might* develop a comorbidity of OSA. And I'm longing for a more positive reason to keep using Kaa, my PR System One BiPAP Auto.
Interesting ideas. I'll need to follow this up. And I did snore (mildly) pre-CPAP, but it's not clear exactly whether or how much I'm still snoring now. As for me being asymptomatic: Not quite "completely", but "mostly" is how I'd state it: In terms of quality of life, there was no daytime sleepiness, no brain fog, and no significant fatigue except for that caused by some joint pain, which magically disappeared in February, but now is back at least part of the time. But hubby would notice snoring and sometimes notice that I'd quit breathing at night. He'd jostle me and I'd start breathing again. I never woke up when he did this. Nor did I ever wake up gasping for breath or feeling like I was drowning. Occasionally I'd wake up sweating---but then I was somewhere between 48 and 50 when hubby started to complain about my stopping breathing and going through menopause. And the waking up sweating was much more likely on days where I was having hot flashes during the daytime. And it most certainly wasn't an every night occurance---no, as I recall I'd wake up sweating maybe 3 or 4 times a month.BTW, I have heard of "localized" damage that can occur due to snoring. I can't remember if you snore or not.
How far away are you from Dr. Avram Gold? If I were you, I would consider a consult with him and ask these questions. He mentioned on the teleseminar that he believes in treating FLs even in the absence of arousals, so that's a very conservative position. I just don't know if he does that only in symptomatic patients (e.g., EDS or functional somatic syndromes) or even if a patient was completely asymptomatic (and not sure you qualify) prior to CPAP. He has that limbic system theory about the functional somatic syndromes, so a question for him would be whether he thinks there is a consequence to the brain (about which my doc said we know little) to not treating, even in the absence of symptoms, and how much evidence is there to support that. You could even shoot him an email. He provided his email address on that teleseminar.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
Re: Can I have my own thread?
I too agree with the "callous theory". I'm glad you're feeling better, SU.
_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Re: Can I have my own thread?
SleepingUgly wrote:Update...
Last few days I've been using the Swift FX for Her with a somewhat uncomfortable chinstrap, which to its credit appears to be doing its job. I added a Padacheek Cozy Barrel cover, and it's been great--leaks are good last few days and it's more comfortable. I'm still having some issues with the comfort of the nasal pillows in/at my nostrils, and there is this tiny flaw in the edge of one of the pillows, which I don't know if it's contributing. But I'm managing the last two days without getting significant sores in my nose (I did have to take it off early last night due to discomfort, though). I'm following my husband's "callous theory", which says that I can't keep going when sores get too bad or I'll be out of commission, but that I must keep going when they aren't too bad so as to toughen up the skin. Last couple of days I've managed that balance.
Also, psychologically I could not hang out a sub-therapeutic pressure of 6 (with an EPR of 0) any longer, so I moved myself up to 7 with an EPR of 1 the last couple of nights. My FLs either look the same or perhaps slightly better than at 6, but still not good (I am not good at reading those, but I know they don't look great). But I'm willing to hang out here for a bit to acclimate, as the last couple of days I've felt a bit better (here's hoping it's related!).
Anyway, that's my update. Thanks for following!
Hi, thanks so much for all the times that you have helped me and didn't know it,I have read so many of your posts.
Let me say that I am glad that you are feeling a little better now. Yes, I agree with your husband's theory,it worked for me.
I tried for a long time to use the swift fx,would leave it for awhile, but always kept coming back.
I now use it every night and love it,sometimes I have to hold my hand in front off it to make sure it's on,it is so comfortable.
I hope the swift works out for you,just make up your mind that this will be the one.
God Bless You!
_________________
Mask: Swift™ FX Bella Nasal Pillow CPAP Mask with Headgears |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Re: Can I have my own thread?
SU, you restated my question much better than I did myself. I'd love to be able to find the literature about health risks for asymptomatic individuals without desats.SleepingUgly wrote:RobySue was asking about the hypothetical person that is asymptomatic without CPAP and becomes symptomatic with CPAP. Muffy mentioned on her thread that risk increases when sleep becomes more disrupted, so I'm not sure there is a health benefit to iatrogenically inducing dysfunction via CPAP in someone who was functioning well without CPAP. But that's an empirical question, as is the question of whether one necessarily progresses to develop more serious OSA (e.g., developing desaturations) with more serious health risks over time, holding other variables constant (e.g., weight gain, etc.). For example, can CPAP use now prevent future desaturations? And is there some utility to using CPAP now to prevent a situation that would then require CPAP to treat?Sleepy Taz wrote:So in answer to your question; yes a cpap can be beneficial even if your blood oxygen levels stay above 90. Without proper sleep a person is subject to many ailments that will alter their lives until it is corrected. You may be saving yourself from years of misery by starting now before the main problem rears its ugly head.
Health risks in asymptomatic individuals without desaturations has surely been addressed in the literature. I just don't know this literature.
In my own case the question really is: Are the disruptions to my sleep, the significant decrease in my daytime functioning, and the significant increase in my day-to-day stress levels that started after I began to use CPAP adversely effecting my health more NOW than the untreated OSA was pre-CPAP---given that I don't desat and have NO existing comorbidities of OSA?
Folks in the sleep doc's office continue to insist that I'm better off WITH CPAP than without, but cannot tell me why---except vague "it will keep you healthier in the long run" reasons without seeming to understand that I no longer feel healthy (most likely because I've now GOT tons of symptoms of sleep deprivation, anxiety, and stress and may be developing signs of depression) and I *did* feel VERY healthy before this adventure began. And I continue to use the BiPAP every night, all night long. And while I was feeling better in late February and the beginning of March, since the beginning of April, my daytime functioning has begun an alarming downward spiral (yet again)---either in spite or because of using the BiPAP. I have no idea which any more. All I know is I wake up feeling lousy most mornings and that I'm overly emotional, angry and overly anxious many days, and feel as though my brain is in a fog. Concentrating on what I need to accomplish at work is difficult to say the least. And all these symptoms started SHORTLY AFTER beginning CPAP therapy. And they've waxed and waned ever since. And since January, there's been the additional stress of the migraine medicine trials to boot.
At the beginning of CPAP, I really hoped that adjusting to CPAP would be a short-term issue, that I'd eventually not resent the presence of the machine in my bedroom, and that I might somehow find that I would go from waking up feeling "ok, but not great with some occasional moderate joint pain and bit of a headache most mornings" to "feeling refreshed the way I did back in my 20s, 30s, and even early-to-mid 40s." I never expected the CPAP to make me feel any better in the daytime because I didn't feel bad in the daytime---except for near constant mild, but annoying headaches that lasted ALL DAY almost EVERY DAY. (The joint pain would come and go with the weather---and I'd be largely free of it for days and weeks at a time in the summer; but it would act up during cold, wet, humid weather in fall, winter, and spring.)
Because "morning headaches" are an oft-cited symptom of OSA, I'd hoped that maybe CPAP would do something for my near constant mild, but highly annoying headaches.. But even though I often had (and still have) a headache when I first wake up, I'm not sure that I can legitimately describe my headaches as "morning" headaches since they last ALL day and most often get WORSE as the day wears on instead of getting better, contrary to the typical "OSA morning headache" that I keep reading about in lists of OSA symptoms. But while there was a real decrease in the frequency of my (morning) headaches in February and part of March, they've come back with a vengeance during April: Most likely because they are likely chronic migraine or sinus related. When I was on the topamax and the lamictral, the morning headaches completely disappeared; but I could not tolerate those meds. The depakote doesn't seem as effective and the morning headaches are back---in spite of using the CPAP with AHI numbers below 2.0 consistently. *sigh*
As I've said before: I'm not looking for an excuse to quit CPAP. But I am looking for a more positive reason to keep plugging away at making this work in spite of all the grief it is causing me. And so far, I can't seem to find any since my current misery is real and profoundly affecting the daily quality of my life. So the promise that CPAP will prevent some unspecified misery due to comorbidities (which I do not currently have) at some future date (how far into the future? 10 years? 20 years? 30 years?) is less and less appealing as a basic motivator. After all, we all have to die of something and if this unspecified health problem that CPAP might prevent isn't likely to happen for another 30 years, well I'll be in my 80s by then. And who's to say that I won't still develop it by then anyway in spite of CPAP---perhaps due to the stress of trying to live with CPAP for thirty years?
To SU: I apologize for the high jacking of your thread.
To others: I apologize for my gloomy thoughts. It's a decently bright day, but once again I feel miserable this afternoon in spite of "sleeping well" according to my machine: Slept for almost 6 hours with only 2 awakenings, the AHI was 1.6 or 1.7 last night, and the machine recorded little snoring so the pressure stayed low enough for my stomach to be happy. But I still feel lousy---headache (woke up with it and it's gotten worse, not better), lack of patience, difficulties with concentration, and pain are all there.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
- SleepingUgly
- Posts: 4690
- Joined: Sat Nov 28, 2009 9:32 pm
Re: Can I have my own thread?
OK, team, not to overwhelm you, but when we've resolved all my CPAP issues, I think there's a circadian rhythm issue to work on too. Which one of you is serving as Executive Functioning for this thread? Please note this problem somewhere in the list of priorities.
_________________
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Rescan 3.10 |
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly
Re: Can I have my own thread?
Noted, SU, noted. Good luck in continuing to resolve your issuesSleepingUgly wrote:OK, team, not to overwhelm you, but when we've resolved all my CPAP issues, I think there's a circadian rhythm issue to work on too. Which one of you is serving as Executive Functioning for this thread? Please note this problem somewhere in the list of priorities.
robysue
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
- SleepingUgly
- Posts: 4690
- Joined: Sat Nov 28, 2009 9:32 pm
Re: Can I have my own thread?
Last night was my first night with my new Hozer. When I took it out of the box I thought that the only thing I'd ever like about it was its name. I thought it was going to look like an IV stand, contributing to the ICU-like motif I've already got going in the bedroom, but actually it looks more like a fishing rod. Apparently I am the Catch of the Day.
Other than how it looks, I liked it, as it seemed I could turn without having to rearrange the hose, which will be helpful toward my long-term, ambitious goal of sleeping through the night. It does seem to require me to be a little further from the edge of the bed than I'd like and more toward the middle (It does OK when I'm turned away from the edge of the bed, but when I turn toward the edge of the bed, it seems to require me to be more toward the middle.) That is a bit of a problem with my other long-term, ambitious goal of ever sleeping in the same bed with my husband again. But that's a problem for another day.
I tried the suggestions people posted on my Sore Nostrils thread in terms of adjusting the Swift FX so that only the very tip of the pillows is in my nose, but it didn't seem to work. Either it's in more than perhaps it should be, or it leaks. I'm using the Medium, which is the largest size that comes with the headgear, so I can't see if Large would work better (it seems hard to imagine that I would need a size that is so rare it's not included...I mean, my nostrils aren't THAT big...).
I received the Padacheek Over-the-top cover for the Swift FX, so I'll be trying that tonight in conjunction with the fishing rod.
Other than how it looks, I liked it, as it seemed I could turn without having to rearrange the hose, which will be helpful toward my long-term, ambitious goal of sleeping through the night. It does seem to require me to be a little further from the edge of the bed than I'd like and more toward the middle (It does OK when I'm turned away from the edge of the bed, but when I turn toward the edge of the bed, it seems to require me to be more toward the middle.) That is a bit of a problem with my other long-term, ambitious goal of ever sleeping in the same bed with my husband again. But that's a problem for another day.
I tried the suggestions people posted on my Sore Nostrils thread in terms of adjusting the Swift FX so that only the very tip of the pillows is in my nose, but it didn't seem to work. Either it's in more than perhaps it should be, or it leaks. I'm using the Medium, which is the largest size that comes with the headgear, so I can't see if Large would work better (it seems hard to imagine that I would need a size that is so rare it's not included...I mean, my nostrils aren't THAT big...).
I received the Padacheek Over-the-top cover for the Swift FX, so I'll be trying that tonight in conjunction with the fishing rod.
_________________
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Rescan 3.10 |
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly
- SleepingUgly
- Posts: 4690
- Joined: Sat Nov 28, 2009 9:32 pm
Re: Can I have my own thread?
I was just about to get in bed, turned the light, and saw the hugest ant I've ever seen in my life, crawling on my bed!!! Now I am afraid that his fiance might be in the hose or something. Plus I'm just grossed out. I am not the biggest chicken when it comes to bugs, but in my bed?! Ewwww! This is not helping my reluctance to go to bed!
I should have used him for bait on the end of my fishing rod.
I should have used him for bait on the end of my fishing rod.
_________________
Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Rescan 3.10 |
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly
Re: Can I have my own thread?
I sympathize greatly with the ants. They've freaked me out a number of times at bedtime when I've found them on the table that holds Kaa.
I love the imagery of you as the Catch of the Day. Best of luck on you quest for sleeping through the night and waking up in some state that's closer to refreshed than stumbling across the floor running into objects ...
Sweet dreams tonight that involve no ants.
I love the imagery of you as the Catch of the Day. Best of luck on you quest for sleeping through the night and waking up in some state that's closer to refreshed than stumbling across the floor running into objects ...
Sweet dreams tonight that involve no ants.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |