Spoke with my Doctor

-SWS wrote:

Muffy wrote:

BleepingBeauty wrote:Disappointed, sure. I mean, I'm glad the doctor doesn't think I have complex sleep apnea..

I would respectfully, but vehemently, disagree. Looking at the total picture...

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.

That's precisely the kind of complex etiology that will in all likelihood present exactly the challenge at finding a sleep-restorative machine pressure that BB has been struggling with for more than a year. Perhaps the doctor said something more along the lines of: "You did not symptomatically present our clinic's diagnostic criteria for complex sleep apnea the night that we happened to record your sleep."

When I spoke with her on the phone, she simply told me that 12cm was the pressure to go with and that my leak rate was acceptable (even though the tech woke me a few times because I was leaking air from my mouth). I asked her, "So, does this mean I don't have Complex Sleep Apnea?" and she said that I don't.

One of my questions for the doctor would be exactly what her diagnostic criteria for "complex sleep apnea" or "complex sleep disordered breathing" happens to be. I would wager a guess that she predominately requires a sufficient central AHI and/or CSR index be presented that particular night---disregarding any typical episodic tendencies from night to night or more subtle manifestations on any given night. Complex sleep-related breathing disorders can be highly episodic and even subtle IMHO. It's as if an underlying sensitive dependency can episodically skew/bifurcate stable sleep and even breathing itself. The end result of that underlying initial physiologic sensitivity to factors in pathophysiology result in episodic fits and spurts of central dysregulation and interrupted sleep in extreme cases---but arguably much more subtle astable cyclic alternating pattern causing poor sleep architecture and disproportionate following-day fatigue in those much more subtle cases. That latter nearly subclinical complex presentation seems to result in extremely disproportionate following-day fatigue as well.

So, if I'm following you correctly, -SWS, I may have CSAS, but it's only obvious at certain times and at other times is "masked" by other factors?

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.

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.

Well, the message is being received, loud and clear. I'm going to force myself to get out and walk on a much more regular basis.

Unfortunately complex sleep disordered breathing is a largely unknown/unexplored condition in sleep medicine today. And practicing clinics are ethically bound to work with poorly established clinical diagnostic criteria. BB, I would very politely ask the doctor what she thinks you have. I sure hope the answer isn't "obstructive sleep apnea". But I would also ask exactly which PSG and non-PSG details she presently focuses on to yield (or perhaps much more importantly rule out) a diagnosis of "complex sleep apnea" or "complex sleep disordered breathing".

Ok, -SWS. I'm making my list of questions for her. As always, thanks.

SaltLakeJan wrote: All it would take now, is for OutaSinc to join our merry little band.

I'm in the merry band. I've been following along with interest with all three of your stories. Here's my story:

viewtopic.php?f=1&t=35298&st=0&sk=t&sd= ... es+Skinner

BB, I don't know if this would be of any help to you, but thought I would mention it, as it is helping me. I knew I had to do something to get me up and moving again. I had a fall in March 2006 that has left me in a lot of pain, and that, along with not getting any good sleep and gaining twenty pounds that I did not need, had left me in a barely functioning mode. A week ago I got a Wii and the Wii Fit, after reading many review on these products.

http://www.amazon.com/s/ref=nb_ss_gw_1_ ... prefix=wii

It makes exercising fun (never thought I would say that). I'm much too timid to ever go to a gym, so this is a good way for me to get moving at my own speed. Bonus: My grandson loves it, too.

Bev

OutaSync wrote: BB, I don't know if this would be of any help to you, but thought I would mention it, as it is helping me. I knew I had to do something to get me up and moving again. I had a fall in March 2006 that has left me in a lot of pain, and that, along with not getting any good sleep and gaining twenty pounds that I did not need, had left me in a barely functioning mode. A week ago I got a Wii and the Wii Fit, after reading many review on these products.

http://www.amazon.com/s/ref=nb_ss_gw_1_ ... prefix=wii

It makes exercising fun (never thought I would say that). I'm much too timid to ever go to a gym, so this is a good way for me to get moving at my own speed. Bonus: My grandson loves it, too.

Bev

Thanks, Bev. What a concept! I'd go for something that makes exercise "fun" in a heartbeat, but the price is daunting at the moment because I may end up having to purchase my own xPAP machine. If I can treat myself well with an APAP, I should be able to scrape up enough extra money to buy the Wii system (and the Wii Fit to go with it). I see they also offer Wii Yoga, which I'd also be interested in. But if it's an ASV, I'll need every spare penny I can find just to cover that expense alone.

Great suggestion, though, and I'll definitely keep it in mind. Thanks.

15 cigarettes a day?! BAD BB!

What time of day do you take that levothyroxine stuff?

Muffy

Muffy wrote:15 cigarettes a day?! BAD BB!

I know, I know. It used to be more, though, so I'm smoking less. One of these days, I'll quit. Again.

What time of day do you take that levothyroxine stuff?

Muffy

I take my prescription drugs, a multivitamin, and Niacin in the morning, and fish oil capsules with lunch and dinner.

BTW, I didn't say this before, but it's nice to "see" you again, Muffy.

Hi all,

Just checking in a little about the set of 4 hypnograms in Muffy's message earlier in this thread- are those yours, Muffy or BleepingBeauty's? The reason I ask is because I have had two titration studies that also demonstrate an EXTREMELY inconsistent response to CPAP. (Chaotic, perhaps, SWS?) Even though I have UARS instead of apnea, there are some similarities. I just got my hands on the hypnograms yesterday, and now that I see the details, there is nothing about them that suggests any level of CPAP treatment that was tried in either of my two titration studies resulted in improved sleep by any measure. For the second study, the doctor did not even prescribe a pressure. It was as if he was too overwhelmed by the conflicting data to even try.

I have been trying different pressures at home, on the grounds that it takes time to get used to each pressure and assess its benefits. I learned how to reset my maching on the internet, thankfully, since it took me 2 hours of driving for each pressure change, not to mention the go round with the doctor's office to get the script that took several days. After 4 months, and every straight CPAP from 5 to 9 (which is the highest I can handle for various reasons), I still feel as exhausted as ever, perhaps moreso. I am going to ask for APAP with a data card, but I also think I should ask for another titration study. It does seem like the doctors don't care about data gathered at home. None of the 4 docs I have seen acted like data even exists. They don't even really look at the previous studies, come to think of it. As for a new titration study - I am going to a FAMOUS university sleep center now, and while they have not impressed me so far, maybe I just haven't given them a chance to show their stuff

Good luck, BB. I am going to my doc on the 4th. If I have any insights, I will share...

twasbrillig wrote:Hi all,

Just checking in a little about the set of 4 hypnograms in Muffy's message earlier in this thread- are those yours, Muffy or BleepingBeauty's?

They're mine, unfortunately.

Good luck, BB. I am going to my doc on the 4th. If I have any insights, I will share...

Thanks, I appreciate that. And the best of luck to you, too.

Muffy wrote:15 cigarettes a day?! BAD BB!
Muffy

What Muffy said, but we love you anyway (((hugs))).

BB, something that would cost less than $40 with shipping and the software is a really neat gizmo called the Omron Pedometer (this pedometer allows you to use the USB cable that comes with it, to upload each days walking to a free program that comes with the unit).

http://www.amazon.com/Omron-HJ-720ITC-P ... B000MN92WM

I have one and I esp like to use it when I am traveling and don't have access to my exercise tapes (I have some very good weight training tapes that allow me to use free weights at home and get in some excellent strength training...by Cathe Friedrich at http://cathe.com/ but forget that for now).

You can attach the pedometer on to the waistband of your clothes and let it do it's thing as you go about your day. The first time you use it you set the pedometer to your stride length. A very general average of strides for 5 miles distance is 10,000 strides, depending on your height and other factors. The monitor will count every step you take and if you aim for 10,000 steps a day, you will probably have to work to get those 10,000 steps in. So you start parking the car at the back of the store parking lot rather than near the door...you take the long way from here to there...you make an effort to walk a little farther throughout the day than you might have before you got your pedometer.

It can be a really easy and motivating way to get in more walking each day than you did in the past. There is a very good health and exercise website called SparkPeople

http://www.sparkpeople.com

that is free and offers a place to record any exercise or eating you have done each day. There is even a support group for folks who are trying to use a pedometer each day to get in more movement. With the pedometer, it is very easy to see how much you move and to work towards adding more movement to each day, without having to make a major lifestyle change. Just something to think about.

I have never smoked so I have never had to try to quit. Knowing that you do smoke, I guess that could rank at least as important or even more important than diet and exercise as a factor in how you feel. I realize that must heavily affect your ability to exercise. In the past I have known a few runners who were smokers first and then took up running...as they tried to run more, they realized that the only way to run more was to quit smoking and they managed to quit smoking so that they could run...it would be nice if just wanting to walk more might help you in your effort to quit smoking. But I have no experience with smoking and exercising (or smoking at all) so all I can do is urge caution and use good judgment when beginning an exercise program (which is a wise action for everybody).

mar

Y'know, if we put up the most recent sleep architecture, grossly there seems to be some good improvement compared to the 2 immediately prior:




However, a sleep efficiency of 82% is fair at best (really need at least 85%, 90% is desirable, 95% would be excellent) and 31 awakenings is poor (you should have like "2").

In re: the question about lower pressure effectiveness, they're all good. The start there seemed aggressive, but it appears they were attacking snores. Interestingly, that was the subject at the end of the Big Discussion (addressing the snores at low pressures).

At this point, there's really no justification for ASV whatsoever. This, too, is in keeping with the concept that time may allow for acclimatization of pressure, resetting apnea threshold and allowing centrals to resolve on their own.

As you see, they're harping on the sleep hygiene thing, too.

Taking levothyroxin at night can generate insomnia, but that would have been too easy.

Overall, I think there's a lot of positive stuff here.

Muffy

robertmarilyn wrote: BB, something that would cost less than $40 with shipping and the software is a really neat gizmo called the Omron Pedometer (this pedometer allows you to use the USB cable that comes with it, to upload each days walking to a free program that comes with the unit).

http://www.amazon.com/Omron-HJ-720ITC-P ... B000MN92WM

mar

Thanks, mar. I bought a pedometer (well, another pedometer) a few months back and do use it when I walk. It didn't come with a gizmo for uploading data, but I know that I walk more when I wear it. It's like anything else, I find: As with my diet, I'm doing better at eating better because I'm conscious of what I'm doing. I keep a food chart for the nutritionist (and myself), and having to plan my meals and write it all down keeps me well aware of my consumption. I'm far less apt to "snack" this way, and I'm sure to get what the nutritionist wants me to eat in the way of protein, carbs, etc.

I wore my first pedometer when I tended bar here a couple of years ago and was surprised to learn that I almost always hit 10,000 steps during a 9-hour shift, just walking back and forth behind the bar, serving drinks. (People around here tend to drink a lot! ) I don't get close to that number of steps each day right now, but I'm going to work on it. I'd love to run, but my knees disagree...

robertmarilyn wrote: BB, something that would cost less than $40 with shipping and the software is a really neat gizmo called the Omron Pedometer (this pedometer allows you to use the USB cable that comes with it, to upload each days walking to a free program that comes with the unit).

http://www.amazon.com/Omron-HJ-720ITC-P ... B000MN92WM

mar

Thanks, mar. I bought a pedometer (well, another pedometer) a few months back and do use it when I walk. It didn't come with a gizmo for uploading data, but I know that I walk more when I wear it. It's like anything else, I find: As with my diet, I'm doing better at eating better because I'm conscious of what I'm doing. I keep a food chart for the nutritionist (and myself), and having to plan my meals and write it all down keeps me well aware of my consumption. I'm far less apt to "snack" this way, and I'm sure to get what the nutritionist wants me to eat in the way of protein, carbs, etc.

I wore my first pedometer when I tended bar here a couple of years ago and was surprised to learn that I almost always hit 10,000 steps during a 9-hour shift, just walking back and forth behind the bar, serving drinks. (People around here tend to drink a lot! ) I don't get close to that number of steps each day right now, but I'm going to work on it. I'd love to run, but my knees disagree...

BleepingBeauty wrote: Thanks, mar. I bought a pedometer (well, another pedometer) a few months back and do use it when I walk. It didn't come with a gizmo for uploading data, but I know that I walk more when I wear it. It's like anything else, I find: As with my diet, I'm doing better at eating better because I'm conscious of what I'm doing. I keep a food chart for the nutritionist (and myself), and having to plan my meals and write it all down keeps me well aware of my consumption. I'm far less apt to "snack" this way, and I'm sure to get what the nutritionist wants me to eat in the way of protein, carbs, etc.
I wore my first pedometer when I tended bar here a couple of years ago and was surprised to learn that I almost always hit 10,000 steps during a 9-hour shift, just walking back and forth behind the bar, serving drinks. (People around here tend to drink a lot! ) I don't get close to that number of steps each day right now, but I'm going to work on it. I'd love to run, but my knees disagree...

Ha ha, I think there is an echo in here

Ah so you understand about the pedometer. Nurses also tend to get a lot of miles in during their work. I will keep a running total of my calories and things like fiber or whatever I am trying to track, in a little notebook. If I am wanting to blow things to bits healthy eating-wise, I have this huge desire not to write things down Always a good sign that I'm wanting to let good eating go to the uh...hogs (tie in to my thread)

I have worn my pedometer when I have been hardly able to move around because I was so tired and I am embarrassed to say that there have been a few days when I didn't even go 300 steps. That really brought to light how much my exhaustion was hurting me...that kind of not moving is very bad for the body and it drains emotional and mental energy too. If I allow too many of those days, esp in a row, I definitely could be heading to feeling very old, way too early in life. At the same time, the fatigue is real and that is why I keep picking myself up and keep trying to figure out what is wrong. This is not the way a healthy and "normal" body should act and I do not want to feel so old so soon.

mar

Muffy, I think I'm seeing double. What causes that? Is it too much too drink? too?

Muffy, I think I'm seeing double. What causes that? Is it too much too drink? too?

GumbyCT wrote:Muffy, I think I'm seeing double. What causes that? Is it too much too drink? too?
Muffy, I think I'm seeing double. What causes that? Is it too much too drink? too?

Oh good, it wasn't just me seeing double
mar

Muffy wrote:Y'know, if we put up the most recent sleep architecture, grossly there seems to be some good improvement compared to the 2 immediately prior:

Yep, I can see that when you place the individual graphs atop one another like that. It's easier to compare. That's good news.

However, a sleep efficiency of 82% is fair at best (really need at least 85%, 90% is desirable, 95% would be excellent) and 31 awakenings is poor (you should have like "2").

Is there something I can do to improve that? And if not, what does that mean for my future treatment needs?

In re: the question about lower pressure effectiveness, they're all good. The start there seemed aggressive, but it appears they were attacking snores. Interestingly, that was the subject at the end of the Big Discussion (addressing the snores at low pressures).

At this point, there's really no justification for ASV whatsoever. This, too, is in keeping with the concept that time may allow for acclimatization of pressure, resetting apnea threshold and allowing centrals to resolve on their own.

Well, I sure am happy to know that something is working in my favor.

As you see, they're harping on the sleep hygiene thing, too.

I don't know what's wrong with my sleep hygiene. I'm usually in bed between 10:30 and 11:30, and I'm asleep within ten minutes. I'm usually awake anywhere between 4:30 and 5:30 a.m. It's just not enough time. I slept for a longer period of time at my sleep study than I have in a very long while at home. I didn't feel much different the next morning, though, I'm guessing because the tech woke me a few times during the night for the mouth leaks.

Taking levothyroxin at night can generate insomnia, but that would have been too easy.

Overall, I think there's a lot of positive stuff here.

Muffy

I've never had issues with insomnia <knock on wood>. No trouble getting to sleep, no trouble staying asleep or getting back to sleep when I have to make a bathroom trip in the middle of the night. I just wake up too early and don't feel rested during the day. I'm still having to nap far too often, which I do early enough in the day that it doesn't interfere with me going to sleep that night. I do nap with la machine; just don't want to feel the need to do it at all.

So, all things considered, what would you advise as my xPAP treatment from here on? If the centrals seem to be resolving themselves and ASV no longer appears to be a necessity, my own plan would be to get myself an APAP with software and reader, set it at a narrow range (maybe 8-12?) to see how I fare at the lower pressures, and then tweak things from there. Is that reasonable, in your opinion? And if not, what do you suggest?

Thanks, Muffin. Your help is always appreciated.