Day 6 Part II: CPAP, Anger, Torture & Waterboarding

[NC_David]

I'm just curious how your sleep study went when you tried CPAP. I've heard answers from minimal sleep (less than 30 minutes) to a full night's sleep (me, fell asleep in 4:53, never 'woke up' 'til it was time to get up). I've heard that it was pure hell to the person slept better than ever. Are you using a similar mask now to what you used then? Although I'm sure there are numerous issues here (both physiological and psychological), how do you feel about CPAP in general, like before ever trying it? I hope you find something conclusive that's easily remedied when you see your Dr.

[DreamStalker]

OK. Your profile shows that you do have the software right?

Yes, I believe so.

Have you looked at your software reports to see what the leak line looks like? Is it flat or is it bouncing around all over the place. No guessing here. Guessing is for horse shoe and hand gernades and perhaps for seeking the truth through water boarding

I haven't. I won't guess. What menu? When I get home I'll look.

Is your doc aware of your air swallowing?

Yes. However he's a PCP with little knowledge on sleep apnea.

Do you have GERD ... or have you ever been checked for GERD ... or are you being treated for GERD? If no, tell your doc you need to be checked for GERD and treated if you have it.

What is GERD?

What do you mean exactly by respiratory irritation? Sinus congestion, coughing, wheezing?

Pain when breathing. Pain in esophogus, throat, and pretty much, entire respiratory system. No apparent congestion, coughing or wheezing. No sinus trouble. Extremely light-headed.

And... this part is odd... I actually feel like I have the CPAP running right now, the feeling in my throat. I almost even feel like my mouth is going to fall open and my cheeks are going to pouch out with chipmunk-cheek.

Can you post a report or two of your data so far?

You mean my sleep tests? Not here or at the moment, but eventually I could.

OK. The ResScan software is for your computer. You need a card reader to read the data from your machine and transfer it to your computer and with the ResScan software you can analyze your data in detail. I'm gussing you don't have the software by your answer for "what menu". OSA therapy requires that the patient take control of their therapy usually because docs are great at diagnosing this condition but terrible and basically incompetent at treating it. So you have to take charge. The software and card reader are very helpful tools to have in order to understand and manage your treatment. Strongly consider getting these tools.

Air swallowing can be a sign of GERD http://en.wikipedia.org/wiki/Gastroesop ... ux_disease. It may also explain what you are calling "respiratory irritation". You likely burned the crap out of your esophagous and throat with stomach acid. You need to get checked for GERD and get it treated (the purple pill most lilkey).

You cannot make a report of your data until you get the software but posting your sleep lab report will be handy for members to help understand your condition and provide good advice.

Now go tell your doc to check you for GERD.

[CharlesVer]

This GERD sounds interesting, one question:

Can GERD's first appearance be, from using a CPAP machine?

I've never had symptoms like this before.

[CharlesVer]

I'm just curious how your sleep study went when you tried CPAP. I've heard answers from minimal sleep (less than 30 minutes) to a full night's sleep (me, fell asleep in 4:53, never 'woke up' 'til it was time to get up). I've heard that it was pure hell to the person slept better than ever. Are you using a similar mask now to what you used then? Although I'm sure there are numerous issues here (both physiological and psychological), how do you feel about CPAP in general, like before ever trying it? I hope you find something conclusive that's easily remedied when you see your Dr.

I slept about 4 or 5 hours, I believe. It actually seemed the best CPAP sleep, though it was a bit of a restless sleep. I woke up at one point feeling great, but it was only 5:00 am. Then, by 9:00 am (study over, at home) I got so tired I went back to sleep.

I was excited to try CPAP. The way others made it sound, it sounded like I'd use it and be in heaven after the first night.

[raylo]

My board-certified, multiple abbreviation sleep specialist, who was highly recommended to me by my very competent and toughtful PCP whose husband is a SA patient, basically would agree with Dream Stalker's assessment of the treatment today for cpap even from doctors who care. He told me that we don't really know much about sleep at all, and that in 50 years we will look back at what we are doing now as though we were operating without anesthesia or using leeches. And he cares! He will rant about the DMEs and what they do to patients. Imagine the level of care from the not so good doctors.

[DreamStalker]

This GERD sounds interesting, one question:

Can GERD's first appearance be, from using a CPAP machine?

I've never had symptoms like this before.

Yes. The CPAP pressure opened up your already weakened lower esophageal sphincter most likely allowing stomach acid to flow out where it should not. You may have had "silent" GERD which has now been awakened by the CPAP therapy. Either way, you need to take cae of it cuz it will only get worse left untreated.

[Guest]

Charles,
I can not say that I know how you feel, but I can tell you my experience. I spent the first month after starting c-pap walking around like a zombie, sleep deprived, filled with air, and not able to think straight. I was much worse than I had been before.

I had been titrated at a pressure of 14 ( not as high as yours) but still on the higher side. I did get used to the pressure after a couple of weeks, but still felt Horrible. I was finally able to talk my sleep doctor into letting me try an auto machine, set at 10 - 20, and I felt better from day one. I could not believe that I felt so much better after only one night, on an auto machine! What I discovered was that I stayed most of the night at 11-12, and only once in awhile did I actually go up to 15.

I now have been using c-pap (auto) for a year now and I have used 5 masks before i found the headrest that I love. My average pressure stays at around 11, but being on an auto it does change occasionally.

I think that when I was titrated I must have had a leaking mask that pushed my pressure up to 14, and that caused an inaccurate titrated number. I would try to use your machine in the auto mode for awhile and see if it makes a difference.

Best of luck,

[Mist]

Here's some info on GERD:

http://digestive.niddk.nih.gov/ddiseases/pubs/gerd/

[CharlesVer]

I keep reading about "Auto" machines. Can anyone explain this to me?

Thanks,
Charlie

PS. Going to the doctor shortly.

[raylo]

The following link is to the manufacturers web site. The specific page is about the machine in your profile and says some about auto adjusting machines in general. Basically they are designed to primarily operate at the lowest effective pressure for you and build pressure to prevent events based on analysis of your breaths. I'll look for better explanations.

[raylo]

Here is the link I left out of previous post:
http://www.resmed.com/us/products/s8_au ... s&sec=true

If you go to the top of this page, you will see a light bulb labeled "Our Collecctive Wisdom," click there and follow the path to slecting your machine. There is much about cpap, apap, etc. I've put some info from there below. There is a lot of valuable info throughout our collective wisdom about a variety of common issues.

Advantages of APAP

1. An APAP machine offers two machines in one. It can be set to a straight CPAP mode, giving the advantages of a constant pressure plus the other advantages of APAP, adjustable pressures and home titration. There are two considerations: your best MACHINE and your best THERAPY (use of the machine). Your best MACHINE may be APAP, since APAP with software allows you to try out both the straight CPAP and APAP therapy modes, as well as check your initial sleep lab titration and make any needed pressure adjustments in the future without repeating a sleep study. By trying both, you can find the best THERAPY, either CPAP or APAP.

2. In the APAP mode, the machine automatically adjusts pressure to meet increased pressure needs when you change positions from side to back, are in the REM dream sleep stage, have a blocked nose due to a cold or allergy, or have taken alcohol or sedatives. (A straight CPAP pressure setting to handle these situations may be too high for comfortable continued use, or may lead to problems like more mask leaks or aerophagia, swallowing air.)

3. Without changing the comfort of the baseline lower pressure, the upper range of the APAP pressure setting will respond to the upper range of apnea/hypopnea events described above (requiring higher pressure) making APAP therapy more effective. A titrated fixed pressure that is too low may miss a sizable number of events on straight CPAP, labeling them as non-responsive, leading to poorer therapy results.

[robertmarilyn]

Later, someone said, “It’s all a matter of attitude.”
Those words were the proof, the confirmation, that they didn’t understand.

I think most who know me in real life and through this forum also know I have a very good attitude. But that attitude isn't taking away the pain and discomfort I am feeling from acid reflux, aerophagia, heartburn, and fatigue. I REALLY feel your pain but I know that doesn't really help you. I wish I could help you...I wish I could help me. All I know to do is to keep trying...I have another gastro doc appt on Tuesday and another sleep study (with a MLST the next day), on June 2.

For the most part, no one has an easy time of getting all this sleep apnea/XPAP "stuff" going smoothly and then there are others like us that have a longer, tougher time getting things running smoothly. I've been on the machine for 10 weeks now and the answer to this working for me is probably still at least a month away at the earliest.

I know this isn't going to help you in any functional way...but believe me, some of us DO understand literally, the discomfort you are going through. At the same time, there are many of those on here who have not had our particular struggles who just may be able to provide an answer or two or three to some of our problems and in the end may be the key to getting closer to figuring this out. Without the help of so many knowledgeable folks on this forum, I wouldn't have the hope I do of getting this figured out. I wish this was easier and less painful. I wish I had the answers, that is for sure!
mar

[GuyK]

I have had some problems with aerophagia (swallowing air), but I was lucky in that I didn't have abdominal pain. What I did have was severe back spasms, at first, which may or may not have been due to aerophagia. I did, however, talk to my sleep doctor about the problem, and for aerophagia he suggested trying Prilosec OTC. I did a 14-day course of that, but didn't see much improvement.

Over time, the back pain has gone away. But I still belch a lot upon waking up.

So, Charlie, I have 4 suggestions:

1. leak rate is important. I think you can read it from your machine, either via the data card, or via the LCD screen.

2. look up the "teflon tape fix" -- basically, go to the elbow joint in your mask, and cover both ends of it with 4 turns of teflon tape -- don't leave frayed ends in your air path because I don't think you want to inhale teflon particles. Wrapping the elbow joint can reduce leakage dramatically.

3. plenty of people (I have no estimate on percentage, but I'd bet almost everyone) are not happy with their first masks -- successful therapy, though, depends on having a comfortable fit, with minimal leaking -- please don't hesitate to talk to your sleep doctor and DME about it. You've mentioned being a side-sleeper. My first mask wasn't so hot for that, while my second one has been better. I have no idea if yet another one would be even better, but if my therapy was giving me a difficult time, I'd look into it.

4. talk to your sleep doctor, ASAP, about the aerophagia -- that is, without a doubt, a common complaint, and gets in the way of comfortable therapy

I have the same Quattro as you -- although I'm fine with it, I've noticed two things about it that I didn't experience with my first mask: rain out (I've had to turn the humidifier down to manage the rain out -- I haven't gone the hose cover route yet, but I probably will); and the itchy spot phenomena (most of the time I can ignore it, but I'm very close to getting a popsicle stick or tongue depressor to slide under the mask).

The point of this last statement is that not every mask seems to have the same issues. One thing I did notice about the itchy spot phenomena. I regularly check my mask for loose hairs. I've found some very long, hard-to-see, brown hairs in my mask. My own hair (what little of it there is) is very short and greying. My wife, of course, denies the hairs are hers. But she has long brown hair.

Guy

[robertmarilyn]

This GERD sounds interesting, one question:
Can GERD's first appearance be, from using a CPAP machine?
I've never had symptoms like this before.

Yes. The CPAP pressure opened up your already weakened lower esophageal sphincter most likely allowing stomach acid to flow out where it should not. You may have had "silent" GERD which has now been awakened by the CPAP therapy. Either way, you need to take care of it cuz it will only get worse left untreated.

DS is right, I am dealing with this exact scenario right now.

mar

[BadBreath]

I agree that attitude adjustment is a more appropriate recommendation when the resistance is psychological, even subconscious, as when people pull off their mask while asleep without even knowing it. Problems of a physical nature require you to work through the issues with a rational, non-reactionary approach, preferably with experienced support, professional or otherwise.

After only one week of unsuccessful treatment I might argue that what you really need is perspective. I was told ( all relatively accurate, I found): that it would be at least six weeks until I was receiving effective therapy, and that is after resolving all of the physical issues (mask fit, leaks, mouth breathing, etc.). It would be three months until you might feel the effects of the then successful therapy. It might be six months until you can sleep through the night without waking (3am consistently for me, then unable to return to sleep for hours). It could be a year of therapy until you catch up on your sleep deficit and get by on the normal eight hours of sleep instead of ten or twelve. And new issues preventing effective therapy could arise after years of success.

So, based on all of that, it would be hard to imagine anyone being successful without an extreme and enduring commitment to managing your own therapy. And while it may eventually seem barbaric compared to the treatments of the future, Cpap is an effective therapy for OSA and any failure is from the lack of effective application. Is it possible that some may never be able to effectively adapt to Cpap for a variety of reasons both physical and emotional? Sure, but not after just one week of trying.

Or from another perspective: imagine being diagnosed with inflammatory breast cancer (rare at 4% of breast cancers), both lobular and ductile (rarer still in combination), and typically at Stage 3 by time diagnosed. That means six treatments, one every three weeks, of the most severe form of chemotherapy available, followed by surgery (a double mastectomy) and then radiation daily for another six weeks. Even if you avoid the nausea and the fevers from low white blood cell count, you will lose your hair and you will have progressively severe anemia (low red blood cell count) meaning that no matter how much sleep you do get, you will be exhausted beyond anything you had previously experienced. And the only option to this medically induced torture is your (most likely) death, either rapid or drawn out. Add financial stress of low income and extra medical bills making you feel you can’t miss work because disability will not provide enough. And yet in spite of at times feeling that death may be the better option, my wife continues to persevere, most often with a positive attitude and a sense of humor.

In no way do I intend to dismiss your experience by comparison, or claim to understand what you are going through. I think your feelings are probably enhanced by untreated OSA, job and financial pressures and the negative effects of a treatment you will probably have to adopt for the rest of your life, seemingly against your will. But I urge you to take a deep breath (emotionally if you are not able to physically), work your way through the myriad issues, and try to gain some long term perspective.