(((Hugs)))...all of you here have been a big help to me and I appreciate the part you have played in helping me to learn. Have a very Happy Birthday BB!BleepingBeauty wrote:I consider myself lucky, compared to good people like you and mar, who've had so much more to deal with physically than I have. You guys are real troopers, and I admire and salute you for your perseverance.
Thanks, 2. Yep, I'm holding on to my optimism but am prepared to take matters into my own hands, if need be. Thanks for the vote of confidence!2flamingos wrote:BB- Sorry to hear about your disappointment after having been sooo optimistic after your first meeting with the new doc. But I have to say, sounda like you are taking everything in stride, and then taking control - not that I would expect anything less from you! Give 'em hell honey!
If I don;t get to chat with you on your b'day - have a happy one! I think you know what by birthday wish for you is. lol
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)| Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece |
| Additional Comments: S8 Elite II, TAP PAP, HumidAireH4i Heated Humidifier |
Glad you found our safe refuge, BB.BleepingBeauty wrote:I feel like I've found a wonderful new family in this forum, and it's comforting and heartwarming to feel like a part of it all. Living as far away from my family as I do, this place now feels like my home-away-from-home.
I've been wanting to ask this question. Is it possible that after doing all the tweaking ,adjustments,less anxiety and finally just getting into the cpap routine, one's pressure needs might be less?BleepingBeauty wrote:
and we'll see how I'm doing at 12cm. (Eighteen months in, and I'm coming full-circle, back to my original pressure; since that didn't seem to work very well for me for the first year of therapy, I don't know how or why it might work for me now. *sigh*)
she said she thinks patients rely too heavily on the data from their machines.
| Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
| Additional Comments: 14/8.4,PS=4, UMFF, 02@2L, |
Thanks, Catnap! That'd be awesome!Catnap wrote:Just wanted to chime in on the birthday wishes -- hope it's the beginning of your best year ever!
That's really good advice. I hadn't thought about getting my prescription on file until I was ready to purchase, but your suggestion makes very good sense (especially if I find the machine I want on the auction). Thanks!If you're thinking about buying from cpap.com or cpapauction.com (and especially the latter, since timing can be important if you're bidding), it's worthwhile to go ahead and get your prescription on file with them now.
Oh, me, too! This place is such a Godsend. I've never been on a forum like this, that offers so much to so many: A wealth of information, wonderful caring participants who so willingly offer their experience/acquired knowledge/wisdom, and the level of support offered to anyone who needs a boost, be it big or small, in their efforts to improve their therapy. I'm proud to be a part of this place.-SWS wrote:Glad you found our safe refuge, BB.
Thanks for the b-day wishes and good vibes!Good birthday hopes and vibes coming from me as well!
I'll save the questions, comments, and thoughts about your sleep study for another day. I have plenty.
Disappointed, sure. I mean, I'm glad the doctor doesn't think I have complex sleep apnea, but it sure is frustrating to not know what the problem is or how to fix it. And now that I'm back around to my original pressure of 12, I feel like I'm running in a big circle and not getting anywhere. But I have turned off the C-Flex on my machine, and maybe that'll make a difference in how well I sleep and how I feel during the day. I'm hoping...OutaSync wrote:BB,
I know that you are disappointed that your Dr. didn't find something that had been missed before and could be easily treated. But you are not back to square one because now you have a supportive community who will help you through this. For some of us there are no easy answers. I have a lot of empathy for your situation and just wanted to send you some encouraging words and wish you a Happy Birthday, as well.
Bev
)Right. There's a lot more to "sleep" than just "AHI" and "we're going with a pressure of 12".BleepingBeauty wrote:I have a bunch of questions about my sleep study, myself, but we'll get into that after I see the doc and get a copy of it in a few weeks. I'll post about it after I've uploaded it. I'm very curious to see what it reveals.
I would respectfully, but vehemently, disagree. Looking at the total picture, including that first terrible titration on the split study:BleepingBeauty wrote:Disappointed, sure. I mean, I'm glad the doctor doesn't think I have complex sleep apnea..
A careful titration and the passage of time may have contributed to this present study, which perhaps "did not exhibit characteristics of CompSAS", and this really shouldn't be a surprise.Muffy wrote:The oximetry previously presented from 11/12/08 and 3/12/09 showed a baseline that didn't look all that bad:
But an important observation is that now oximetry (and respiratory events) have become far more stable despite using similar pressures. I think this example shows (1) how aggressive attack is counterproductive (hey, if you got a string of centrals, chances are they ain't gonna get much better if you continue a staircase titration); and (2) simply allowing time for the body to equilibrate may solve a lot of the central problem.
BTW, those were generated prior to the new standards for NREM, which now combine Stages 3 & 4.somebody must've wrote:These are examples of hypnograms showing sleep architecture during a full night's sleep.
The first example represents normal sleep. Sleep progresses from wake, through light sleep (Stage 1 and 2), followed by deep sleep (Stages 3 & 4), and finally a REM period. This is called a Sleep Cycle, and takes about 90 minutes to complete. There are usually 4-6 Sleep Cycles per night. Most deep or delta sleep occurs in the first Sleep Cycle. The duration of REM periods increase as the night goes on. Normal sleep stage percentages are Stage 1 5%, Stage 2 60%, Stage 3 & 4 combined 20%, and REM 20%. Delta sleep generally decreases as a function of age.
This example represents someone with OSA. After sleep onset, the patient moves back and forth from Stage 1 to Stage 2 sleep. Stage 1 sleep is simply a transition stage to quality sleep and should only appear at the begining of the night. It has virtually no value as far as restorative sleep goes. It is should not appear to any great degree once bona fide sleep begins. There is no delta sleep whatsoever. REM sleep is 19.9%. The patient is aroused to wake at least 10 times. There is some continuous stage 2 and REM sleep, but overall this is fairly poor quality sleep, with frequent disruptions caused by OSA.
This example shows a patient with a large quantity of delta sleep (20.8%) and REM sleep (33.8%). Sleep is fairly continuous. This patient will be well rested in the morning. This patient is the one from example 2 during his CPAP titration. This greater than normal quantity of delta and REM sleep is termed Rebound Phenomenon. With regular use, the CPAP user will move to a more normal sleep architecture as the "sleep debt" is paid off. This usually occurs in a day or so. This also serves to explain why some people think they slept so well in the lab, but then do poorly at home. It's not that they're doing poorly, they're actually now approaching normal architecture, the aggravating factor is now gone.
This example represents a Split-Night study. Initially, there is a very disrupted, light sleep pattern, that turns into prolonged REM after application of CPAP. There are areas of sustained sleep, but there are still areas of disrupted light sleep. This patient also had Periodic Limb Movements which continued to disrupt sleep even though respiratory events were well-controlled on CPAP.
There should probably be about 40-50 stage shifts in a normal, healthy patient not troubled by lab effect (the test itself can drive up the stage shifts). Most references are looking at about 7 stage shifts per hour, give or take.
Muffy wrote:My biggest fear is mixing up the data from the "triplets" (SLJ, BB and mar).
Ha ha, the problem kiddies
As soon as RG wakes up, she's going to say "That's 105!"
Grownup talk?
There's no way they're going to send Omir Santos down now.
The Mets will spend another day in first place with a large contribution from a patch-work lineup that won't sell many uniform shirts at the concession stands. It helps that their starting pitchers are providing the necessary number of innings and that important baseballs heading toward the stands have been umpire-aided. Or was it simply that the other team was the Washington Gnats and Friday night it was the floundering Marlins?
It's four in a row now, after the 2-1, 11th-inning win over Florida, their sixth in seven games since their escape from Los Angeles. Their first run, tying the game, came in the fifth inning, a home run by catcher Omir Santos on an 0-2 pitch. He isn't the unlikeliest Met to put the ball in the stands, but let's face it, they weren't expecting that kind of production when they brought him up after Brian Schneider went on the disabled list last month.
Santos flied out his next time up and popped up in the ninth. His next chance came two innings later. Gary Sheffield, who didn't put on a Met uniform until a day before the season began, led off the 11th with a single to left. David Wright, up next, struck out for the second time. He left four runners in scoring position. But this wasn't a night for the familiar stars.
With Fernando Tatis batting, Sheffield, who gave Wright his chance to be a hero, decided it was time to get moving. He took off for second. He beat the off-line throw from catcher Ronny Paulino and made it to third when the ball continued into the outfield. "I can steal bases," Sheffield said later. Not that anybody said he couldn't. Two years ago, with Detroit, he swiped 22 bases. Not bad for an old man.
Tatis reached first when he was hit by a pitch, but this game wasn't about Tatis.
Santos was back at the plate. "I saw the infield in," he said. So that tells us he pays attention. "I wanted to put the ball in play."
He swung at the first pitch and rapped the ball into left. Sheffield came home to end it.
This gives Santos 12 RBI in his last 14 games, a .276 average. That wasn't supposed to happen. He's 28 years old, and his only big league numbers are one (hit) in 10 (chances) with the Orioles last year. His first start for the Mets, April 19, he doubled and tripled. The double was his first extra-base hit. You might even wonder if he knew how to reach second base.
Eight days later, he smoked a grand slam. And smacked a game-winning two-run homer off Jonathan Papelbon when the Mets made that nice little stop in Boston last weekend.
Read more: http://www.nydailynews.com/sports/baseb ... Gz6DkyTJ&B
Hey BB, how's the diet and exercise thing going? Right now, IMO, THAT would give you the most bang for the buck.
BB, despite feeling like "who knows what is going on with me, but it could be a bunch of things" what really is helping me a LOT is focusing on my exercise program and good, healthy, moderate eating. It is something I can do NOW and do WELL and do on my own without the help of a doctor, without a prescription, without waiting for an appointment. Nobody can put me off and tell me I can't get started with this now because they won't give me an appointment for months on end. Getting going with the diet (healthy eating) and exercise NOW, GETS US GOING. If you need any encouragement or suggestions in this area, ask me because healthy living is a way of life for me...I think focusing on this aspect of my life had kept me sane and kept me going despite feeling like I was going backwards where doctors were concerned. We DO have control of our lives in this area...and Muffy is right, THAT WILL give you the most bang for the buck And for the most part, IT'S FREE
At the annual physical, the Muffy MD said "your vitamin D is a little low". Now that's a surprise, since she gets quite a bit of "real organic VitD" every day ("weather permitting"), and shoves in 2000 IU tablets (although in a somewhat disorganized fashion) like tic tacs.
That Vit D is important...we all need to be sure we are up to snuff on it. Since we rarely ever have a cloud in the sky where I live, east of El Paso, getting out and hiking does me up good on the Vit D (although I do take a Vit D supplement with my Calcium supplement). Another thing I do here though, is use an sunblock of SPF 90 on my exposed skin and shirts with sun protection built in...and wear wide brimmed hats and a wide brimmed visor on my riding helmet. The sun can be a killer
Listen to Muffy, BB...she knows what she is talking about
mar
I know
Muffy
See
mar
| Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
| Additional Comments: Began CPAP 1-16-2009, Pressure=10 cm, Mask, CMS 50Plus Oximeter |
IMHO any non-cardiac patient who can produce that original AHI of 107, central apnea, and Cheyne Stokes respiration (along with such repeated clear pressure-induction patterns of central dysregulation) ain't never gonna be a vanilla obstructive etiology case---regardless of any appreciable degree of biological adaptation to machine pressure therapy over time.Muffy wrote:I would respectfully, but vehemently, disagree. Looking at the total picture...BleepingBeauty wrote:Disappointed, sure. I mean, I'm glad the doctor doesn't think I have complex sleep apnea..
That's a load of hard work and such a difficult path IMHO. But I also think that advice is even more important for people like BB than perhaps even the rest of us---if she happens to have an underlying complex etiology that is as sensitive-dependent on underlying pathophysiologic variables as I strongly suspect. Minimizing diaphragmatic work load during sleep contributes to less neuromuscularly labored autonomic breathing---and that, in turn, contributes to uniformity in central signaling itself. Cardiovascular exercise during the day arguably establishes much healthier autonomic patterning in general. And patients with this complex underlying etiology are arguably the ones who will be much more susceptible to that disproportionate fatigue, at simply having to carry any given increased body mass----meaning it will wear them out to carry an extra sixty pounds throughout the day far more than it will ever wear out an otherwise healthy and identically overweight person.Muffy wrote:Hey BB, how's the diet and exercise thing going? Right now, IMO, THAT would give you the most bang for the buck.
Muffy, my darling cupcake, thank you SO much for posting the graphs showing the varying hynograms with explanations re: what they mean. I understand that mine don't look good (awful, as you so succinctly put it), but since I had no idea what normal sleep architecture should look like, I had nothing to compare mine to. That was VERY helpful, so many thanks.Muffy wrote: it is very clear that there WAS CompSAS.
A careful titration and the passage of time may have contributed to this present study, which perhaps "did not exhibit characteristics of CompSAS", and this really shouldn't be a surprise.
A think a closer look at your response to some of the lower pressures may be beneficial.
Further, I think looking at sleep architecture should be coming more to the forefront.
It just hit me that there's no comparison to what is "good". Here's a little blurb:
somebody must've wrote:These are examples of hypnograms showing sleep architecture during a full night's sleep.
Well, I've got a month before I see the doctor for the results, when I can ask my questions. But since she's apparently not of the opinion that I'm dealing with CompSAS, I don't imagine she'll recommend an ASV machine for me. (She seemed to backtrack, from my meeting with her a month ago, on the benefit of patients having access to data, so take that for what it's worth.) I don't have answers for your questions, Muff. I still feel like I'm very much in the dark about the treatment I need to correct my problems and, if my doctor doesn't see what others do, where do I go from there? It's all very unnerving, and I don't know what to do at this point...Before you drop a bundle on an APAP and software, which algorithm are you going to get? If you use the Respironics, what are you going to do if you get a download like you got in April (IMO, those screwy numbers are from an aggressive APAP approach-- remember the "maybe sitting on 7.0 cmH2O may produce good info" thing) but what if that was artifact from sleep transition issues (although I think looking at Variable Breathing would give a clue there)?
Muffy
) Oh, so this is where that post originated. (Shame on you, Jan, for confuzzling me! I'm confuzzled enough as it is, thanks.)Muffy wrote:My biggest fear is mixing up the data from the "triplets" (SLJ, BB and mar).
The diet's going well, thanks. The exercise, not so much. Most days, it's a struggle the find the energy to exert myself. I haven't given up on it, but I'm not nearly as consistent with it as I'd like to be (and know I should be). I see the nutritionist again in a couple of weeks, but I don't think I've lost any weight.Hey BB, how's the diet and exercise thing going? Right now, IMO, THAT would give you the most bang for the buck.
) True words, mar. The healthy eating is not a problem, and I've been doing well with that. But the energy for exercise IS a problem. I just need to force myself to get out and DO it, no matter what.robertmarilyn wrote: BB, despite feeling like "who knows what is going on with me, but it could be a bunch of things" what really is helping me a LOT is focusing on my exercise program and good, healthy, moderate eating. It is something I can do NOW and do WELL and do on my own without the help of a doctor, without a prescription, without waiting for an appointment. Nobody can put me off and tell me I can't get started with this now because they won't give me an appointment for months on end. Getting going with the diet (healthy eating) and exercise NOW, GETS US GOING. If you need any encouragement or suggestions in this area, ask me because healthy living is a way of life for me...I think focusing on this aspect of my life had kept me sane and kept me going despite feeling like I was going backwards where doctors were concerned. We DO have control of our lives in this area...and Muffy is right, THAT WILL give you the most bang for the buck And for the most part, IT'S FREE
Yes, she certainly does.Listen to Muffy, BB...she knows what she is talking about
mar
I know
Muffy
See
mar
)
