Nighthawkeye?

Linda3032 · Post by **Linda3032** » Sat Jan 06, 2007 5:31 pm

Where did Nighthawkeye go? I haven't seen him around since before I went on my trip last summer.

Nighthawkeye, if you are posting under a new name please PM me.

NightHawkeye · Post by **NightHawkeye** » Sat Jan 06, 2007 8:25 pm

I'm touched, Linda! Thanks for thinking about me. I'm alive and doing well. In fact, I celebrated my 1 year anniversary on xPAP just a few days ago.

I guess you could say I reached a point where I just needed to get on with other things in life. Thanks to this forum I acquired enough knowledge to manage my xPAP therapy reasonably well (and learned even more about how to deal with physicians effectively). I haven't forgotten about cpaptalk though. I've been tuning in every so often, but haven't felt the need to jump in on any threads.

I've been thinking about starting a thread on some of my own recent xPAP experiences, but am afraid it might be too rambling, and probably of limited interest. My personal apnea seems to be related not only to TMJ issues, but also to edema (apparently without CHF). It seems that my food choices end up having a big effect on my apnea, so making good eating choices is my current focus, along with a little moderate exercise.

Again, thanks for asking, Linda. Like many folks here, I haven't really disappeared, and I expect to participate every now and again. This really is a very special forum. Since becoming a member here I've come across a few forums dealing with other health issues, but none of them comes close to hosting open, candid, and genuinely useful discussions like those found here.

Very best regards,
Bill

bdp522 · Post by **bdp522** » Sat Jan 06, 2007 8:59 pm

Please do tell your story! How do you think I learn so much? I read every post and try to remember little tricks that work for others. Most of the people that have helped me with cpap had no idea they were helping. They just posted their story.

Brenda

DreamStalker · Post by **DreamStalker** » Sat Jan 06, 2007 10:56 pm

Ditto on what Brenda said ... I would be especially interested in hearing about the relationship you have discovered between food choices and apnea.

I have been reading a lot of books on nutrition and diet over the past 2 to 3 months.

harikarishimari · Post by **harikarishimari** » Sat Jan 06, 2007 11:53 pm

I admit I was starting to worry about you. Another month or two we might have organized a search party. (Or at least a PARTY in your honor!) What have I to say, I have been off the board for at least as long or longer, in fact out of the country most of that time.

I recall your "Patient's Bill of Rights". That has stuck with me. Truly inspired.

And after about a year also on APAP, I continue to be amazed at how naive patients continue to get ripped off by greedy uncaring DMEs, and how they get stuck with dumb inadequate equipment, and the dropout rate is high and compliance is low. But oh well, some things never change.

As for me, I am quite happy and used to the APAP therapy, I couldn't IMAGINE being without it. After experimenting with multiple humidifiers and such, I have settled on placing several "sonic" type humidifiers about the house, ($99 BBBY). I feel better. My 2 daughers and hubby think I am WACKO! (they're right), but I tell them it's "for the african violets". We all know better. That, and the Padacheeks, and the heated hose, life is wonderful.

Good to see you back, Nighthawkeye !

-HKS

gulfpearl · Post by **gulfpearl** » Sun Jan 07, 2007 2:30 am

Nighthawkeye please tell us about your edema issues. I am also suffering from edema not related to CHF, I am sure this affects my treatment.

whatrdreamsmadeof · Post by **whatrdreamsmadeof** » Sun Jan 07, 2007 1:05 pm

I'm with Roberto on this one, you have no idea how may lives you touch. Please post any and all your experiences and relationships that may affect your treatmeant, INQUIRING MINDS WANT TO KNOW!!!!!!!!!!

kteague · Post by **kteague** » Sun Jan 07, 2007 2:07 pm

Ditto, especially on the effects of edema and foods.
Kathy

Ric · Post by **Ric** » Sun Jan 07, 2007 5:14 pm

NightHawkeye wrote:I'm touched, Linda! Thanks for thinking about me. I'm alive and doing well. In fact, I celebrated my 1 year anniversary on xPAP just a few days ago. Very best regards, Bill

Happy anniversary, Bill !!

(mine came and went sometime in December, i forgot to notice, but yeah that is something to celebrate.)

Harikarishimari wrote:I have settled on placing several "sonic" type humidifiers about the house, ($99 BBBY)

Can you elaborate? something about 99 bottles of beer on the wall? $99 babies? is that a ticker symbol? (bed bath and beyond) Do you st-st-stutter? Did you st-steal it? ($99 bye-bye-baby!) You stole it from a plant nursery? You stole it from a hospital nursery? You bought it from one or more of the above? I can think of other possibilities, but somehow I feel it needs to work into a "humidifier" theme. HELP !

(and thanks HKS, I DO like your attitude! and I'm very interested in the humidifier)

-Ric

ColoZZZ · Post by **ColoZZZ** » Sun Jan 07, 2007 5:27 pm

I'm also quite interested in hearing how food choices affect one's apnea. ...but only as long as you don't say that chocolate or bacon can advesely impact one's Apnea!

But seriously, do tell!

Thanks,

--Andy

-SWS · Post by **-SWS** » Mon Jan 08, 2007 11:24 am

Bill, if you can correlate dietary factors to both edema and increased AHI, then you just might be experiencing increased pharyngeal or other airway resistance related to your edema. Researchers are currently considering the etiologic possibility that soft tissue "fluid displacement" (or upper thoracic "fluid loading") just may be a significant contributor to AHI variability in at least some patients.

We recently discussed this etiologic possibility in the following thread:
viewtopic.php?t=15978

Aside from watching your dietary intake, you just may want to consider experimentally sleeping with your head and torso elevated. Good luck and please let us know what you find out, Bill. If you can draw a hard correlation to specific food intake, edema, and increased AHI, then you might also want to consider contacting the researchers cited in the linked news article above.

dsm · Post by **dsm** » Mon Jan 08, 2007 3:13 pm

Hi Bill,

Pleased to hear all is progressing well. I too was wondering why no recent posts but put it down to you gaining so much knowledge that you decided to follow other interests.

This forum is pretty unique though isn't it

Cheers & a happy 2007

DSM

Alisha · Post by **Alisha** » Mon Jan 08, 2007 6:14 pm

NIGHTHAWKEYE QUOTE: " I've been thinking about starting a thread on some of my own recent xPAP experiences, but am afraid it might be too rambling, and probably of limited interest. My personal apnea seems to be related not only to TMJ issues, but also to edema (apparently without CHF). It seems that my food choices end up having a big effect on my apnea, so making good eating choices is my current focus, along with a little moderate exercise."

Ramble all you will, Nighthawkeye, please. With OSA, TMJ, and edema with no determined cause, plus believing food choices may affect all of these, I would be grateful to read about your experiences, anything you have discovered that connects or helps either and/or all of these.

We'll be waiting to hear more from you.

Alisha

harikarishimari · Post by **harikarishimari** » Mon Jan 08, 2007 10:27 pm

Ric wrote:
Harikarishimari wrote:I have settled on placing several "sonic" type humidifiers about the house, ($99 BBBY)
Can you elaborate? something about 99 bottles of ...

I like your answers better, but no, just a simple Venta® Sonic Humidifier that I found at (you guessed right) bed bath and beyond. Four (4) of them actually. that I keep about the flat. (I have since found them cheaper elsewhere online). BBBY also has more expensive, and probably better models. But nevermind, humidity is my personal issue, I can't get enuf of it. Has to do with growing up in the tropics and finding myself somewhere in the Nevada desert for no apparent reason, can't even remember why. OH! maybe something to do with hubby in the military and 2 kids at UNLV. Yes! that must be IT! Otherwise who would live here voluntarily (?) I could not tolerate APAP for even 10 minutes without a humidifier. (These are not INSTEAD of the HH that is specific for the RemStar, I have one of those too!). Thanks for asking.

NightHawkeye · Post by **NightHawkeye** » Tue Jan 09, 2007 5:59 am

Alisha wrote:Ramble all you will, Nighthawkeye, please. With OSA, TMJ, and edema with no determined cause, plus believing food choices may affect all of these, I would be grateful to read about your experiences, anything you have discovered that connects or helps either and/or all of these.

I wish I had all of those connected, Alisha. Instead, I seem to find mere tidbits that help some of the time. For instance, I've discovered that since I started eating "Inca Red" quinoa cereal for breakfast a week ago, my days get off to a much better start. I'm beginning to believe the claims that much of our modern grocery store foods are devoid of vital nutrients. I don't even know how to characterize my diet except to say that it's low in acid foods in order to minimize GERD, low in fat, and low in sugar. I don't much care for processed foods either, but find them hard to avoid, and I do like to sample McDonald's fries when my kids order them.

Thanks for the link on edema, -SWS. It's along the lines of what I read some weeks ago, in the Wall Street Journal IIRC. Like the test subjects in the article, I'm not overweight. I do, however, experience slight edema in my feet, often visible at bedtime, and my apnea tends to occur in the latter hours of sleep after fluid has had time to redistribute. For years I slept with the head of the bed elevated slightly. That was followed by sleeping sitting up for a few more years until starting xPAP therapy. Even now, particularly when aerophagia gets bad, I'll revert to sleeping the remainder of the night sitting up in bed with the machine OFF.

At least part of my apnea appears to be caused by the same TMJ issues which prevented me from being able to wear a full-face mask because at some point increased pressure pushed my lower jaw back, thereby increasing my apnea. However, it also appears that part of my apnea correlates with the edema.

Even before reading the article on edema, I'd gone back to using APAP again. My BiPAP-auto broke while I was traveling a few months ago, and although I'd taken the unit apart and repaired a broken tubing connector inside with RTV, in the mean time I'd noticed that I slept better with the APAP, albeit with a slightly higher AHI. I now routinely get seven hours of sleep a night with the Remstar, sometimes even more, whereas I rarely got more than six hours with the BiPAP-auto.

The APAP also seems better than the BiPAP-auto for controlling edema. I've never been diagnosed with CHF, nor have I had an enlarged heart. Instead, I've always gotten a clean bill of health from the cardiologists. (Except for an occasional diagnosis of MVP which they regard as a mere nuisance. Mostly, the cardiologists have, as authoritatively as possible, simply asserted that I didn't even have MVP). Interestingly though, in my sleep study report, the tech highlighted a few seconds of anomalous cardiac data - which I later correlated with other recordings (found on the internet) of heart murmurs. I believe that those were the beginnings of the atrial flutter/fibrillation which I sometimes experience.

I've probably rambled on too long here. I'll conclude by saying that, besides a little moderate exercise, one of the things which seems to work for me is the really firm memory foam pillows. They keep my head elevated without letting it sink into the pillows. I believe that sinking into ordinary pillows aggravated my apnea because of TMJ issues.

I've given a lot of thought to a dental appliance to keep my jaw from moving back, but on many nights now, my APAP records no apneas, and only a few hypopneas, so I think I'm onto a few things, but can't definitively attribute the reasons for the successes, such as they are. Most nights now, the APAP has only a few pressure increases though, and on a few really good nights, not any pressure increases at all.

So there it is. Mostly, just a few things which seem to work for me. If I do find anything conclusive about any of this though, I'll post that too.

Regards,
Bill

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