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

drubin007 wrote:

raylo wrote: My first mask took skin off my nose.

that is nuts! I feel like I am on the brink of that now....
I an ot going to jack up the guys thread, but when you have that much
discomfort what mask do you use until that area heals?
I posted up above, and I am waiting for a callback from the place now...
I took the mask off about 2 am (8 hours ago) and it still feels like
someone punched me between the eyes. I have no doubt if I keep wearing
the mask I have now I will be losing skin too

There are several things to do (first get a new mask - I went from the offending flexi-fit 407 to an activa lt and a micro and now use the wonderful swift lt). Finding the right mask is one of the keys to the whole thing.

In the mean time you can try mole skin or liquid skin. It is very much better if you can use these before you actually rub skin off. Liquid skin can sting a raw open wound pretty good and taking anything off an open wound is unpleasant. If you need more help, try a search or you maybe should start a new thread (Charles deserves his own), perhaps Rested Gal will swoop in with one of her patented helpful links and hints posts.

raylo wrote:Charles, I understand the frustration you are feeling. Please try to remember that some of the folks here have been through the same thing as you. I remember days where aerophagia had me virtually unable to sit down comfortably. Many of us, myself included, have had water go up our noses while sleeping (literally) as part of the learning/adjustment curve. Some people on here have had worse. Sleep deprivation is a form of torture, cpap is a treatment for it that can sometimes throw your whole balance of life off during the adjustment phase. This board is full of people with horror stories about learning to cope with some of the issues that arise during cpap. It ain't easy and everyone here knows it.

Thank you. The only thing I disagree with is that everyone knows what I'm feeling. I have not even related or described every feeling and sensation I've experienced as a result of treatment, and it's improbable that anyone has experienced what I have. Some of it is too personal, and some of it I cannot even put into words, but it all has its origins from the day I put on that mask. No two people are alike, and nobody knows exactly what anyone else feels.

I understand that there are some commonalities, but even the very reaction this post has brought from some people demonstrates to me that some people here do not understand at all what I'm experiencing.

Those blaming my attitude are simply wrong. They are like the outsider blaming the victim of rape for the actions of the rapist.

And just because your treatment has succeeded, does not mean that someone else's treatment's failure is the fault of the person, and not the treatment.

Charles, I know every human is different, but we have a very common experience. On this website nearly every single person has suffered from sleep deprivation for years. Or at least been deprived of meaningful sleep and more importantly oxygen for years. I think the isolation that seem to be feeling is also common. Depression can be a related symptom. Being cranky and angry is very common in us SA folks, particularly before cpap. Messing with sleep is stressful. This is not a board with a bunch of people who haven't felt like you I think it safe to say that this bunch has a lot of people who have had serious trials and tribulations with cpap and all that comes with it. We have been sleep deprived, we have been literally waterboarded. Many of us have been treated like crap by providers, some even by doctors. Many have had significant issues with lack of understanding by significant others. Many have had SA in tandem with other serious illnesses. Most have torn masks off in frustration. Most have wondered if this was ever going to work. If you have had SA for some time or have severe apnea, you are in a very bad place right now. The treatment can start off feeling like it is worse than the condition.

There have been people on here who sounded like you and quit. I think everyone here wants you, Charles, to succeed. This is probably the the place where you going to find the most people who have been through the same diagnois and adjustment as you are going through. And this is probably the place where you will get the most understanding and help. It may sometimes be "tough love" because sometimes that it what has kept others going. It also probaably the place where you are going to get the most honest answers about SA and its treatment.

Go back through some of the older threads and tales of woe from people with very serious conditions. This site has made a real difference in people's lives.

yardbird wrote:Charlie, When I was diagnosed, I think I was much like you. The machine was noisy. The mask actually hurt my face. When I complained about the mask I was told, "You'll get used to it."

huh? Here.... let me put this C-clamp on your nose and see if YOU get used to it, a$$hat...

There were SO many things to "get used to" that I quit. Screw this. Nobody can POSSIBLY get used to this.

I just wanted to say that what you just discribed is nothing like what I've experienced.

The mask bothers my face, no problem, I can deal with that. And I IN NO WAY have just said, "Screw this I quit." Indeed, in EVERY POST HERE, and in the chat last night, I've made it clear that I'M NOT GIVING UP on this treatment (or treatment in general.) I'm bound and determined TO TREAT this condition. If anything my "attitude" that some here have complained about, is actually STUBBORN DETERMINATION, TO TREAT my sleep apnea!

Six days with virtually no sleep, lung pain and head pain where I literally feel like, every time I breath my chest is going to explode, a balloon in my stomach, swallowing bubbles the size of pool balls over and over again, then driving to work the next day...

You know, sleep apnea might kill me, but I'll die a lot faster if I crash on my way to work!

And I've had other issues I haven't even been able to describe here.

Torture is not a word I take lightly. It's not like, "oh, that stings, it's simply torture."
I'm seriously talking about something very extreme.

What's frustrating me the most on this board is this...

Not one person so far, not one has conceded what I consider an obvious truth:

It is possible that the CPAP machine, for some people, is a treatment that won't work.

A failed treatment. Not a failed person. An unsuccessful treatment.

I don't want it to be that way!
I'm still not even sure it will be, which is why I will put the mask back on and I will work on my settings and adjust the machine and I will try again!

But you can't say, just because CPAP worked for you, that CPAP works for everyone.
You can't say, because treatment suceeded for you, that it succeeds for everyone.
You can't say, that if treatment failed me, that I failed.
Or even if it succeeds for me, that anyone who the treatment fails is a failure.

It's not like I just put on the mask and said, "Oh, this is uncomfortable, I quit."

I put on the mask with the highest hopes that it would work.
I struggled through the worst week of my life.
And I'm determined to continue the struggle.
And I'm determined to treat my apnea, one way or another.

By the way, I never mentioned this before the my last post, I might as well mention it now.

My lungs feel a little like they're going to explode. I walk around and feel like I still have the mask on, like my lungs are being pressed by compressed air. My throat is similar. I think I've irritated my entire respiratory system. Is that normal?

CharlesVer wrote:

raylo wrote:Charles, I understand the frustration you are feeling. Please try to remember that some of the folks here have been through the same thing as you. I remember days where aerophagia had me virtually unable to sit down comfortably. Many of us, myself included, have had water go up our noses while sleeping (literally) as part of the learning/adjustment curve. Some people on here have had worse. Sleep deprivation is a form of torture, cpap is a treatment for it that can sometimes throw your whole balance of life off during the adjustment phase. This board is full of people with horror stories about learning to cope with some of the issues that arise during cpap. It ain't easy and everyone here knows it.

Thank you. The only thing I disagree with is that everyone knows what I'm feeling. I have not even related or described every feeling and sensation I've experienced as a result of treatment, and it's improbable that anyone has experienced what I have. Some of it is too personal, and some of it I cannot even put into words, but it all has its origins from the day I put on that mask. No two people are alike, and nobody knows exactly what anyone else feels.

I understand that there are some commonalities, but even the very reaction this post has brought from some people demonstrates to me that some people here do not understand at all what I'm experiencing.

Those blaming my attitude are simply wrong. They are like the outsider blaming the victim of rape for the actions of the rapist.

And just because your treatment has succeeded, does not mean that someone else's treatment's failure is the fault of the person, and not the treatment.

Charlie,

I think you are tired and exhausted and in need of emotional support. Perhaps you can talk to someone you love or trust about how important it is to make your therapy work. Perhaps you can talk to your employer about taking a few days off from work to get adjusted to the therapy. I admit I'm pretty gruff when it comes to "attitude" about this treatment. Getting the therapy started is hard and it does take time (my first week was also the hardest for me). Don't get discouraged, be patient, and keep on keeing on.

Yes it is normal for some. In a few days your back and ribs will begin to ache and feel bruised. You will also get the aerophagia (stomach gas) symptoms at some point. Then there will be the rainout where you really feel like you are being water boarded. Your body WILL adjust and things WILL get better.

You're here. You're trying. You're educating yourself. You're bitching and whining, which is a GOOD thing because it means you are continuing to try even though the road is rough.

I'm three months in on my treatment, and feeling great. I can't imagine sleeping without my mask. I love my mask. I love it so much that I drool all over it every night and wake up with love-lines all over my face.

But I remember how bad I felt when I hit bottom last winter. I remember how much I hated my first mask, which didn't fit quite right and constantly leaked. The sleep deprivation, the emotional and mental fatigue/rawness. The frustration. The farting and belching and cramping of my initial aerophagia.

It took a few masks and it took a few weeks and it took a lot of help and advice from people on this board...but eventually I got it under control. You may encounter some "tough love" on this board, but even "tough love" is still "love". I know it's hard, but keep working on making the treatment better, and keep trying to get used to it. It will eventually pay off for you, and a few months from now you'll look back and think, "Wow, I was a mess...I love my mask!"

As for specifics, I found that I swallowed a lot and had bad aerophagia when I started. And it didn't even occur to me (until I read your post), that most of that has gone away. I no longer feel like I am over-salivating when I put the mask on, but I did the first few weeks. And now when I swallow, my ears no longer pop and I don't feel like I'm gulping air. I do still tend to belch and fart a bit the first hour of the day, but it's not very bad anymore.

The human body is an amazing machine. Mine got used to being suffocated every night, and allowed me to semi-function with crap for REM sleep, high blood pressure, low oxygen levels, et cetera thanks to sleep apnea. It took a few weeks to get used to a pressure mask on my face, but it did eventually get used to it. It took a couple months to re-train my body that it was OK to just relax and sleep with CPAP, but I got there.

Best of luck to you!

Charlie,

I've been away from the forum for about a week so I haven't been able to follow your posts, but I did go back through them and tried to browse through them to get some idea of what your problems have been.

So far, I've gathered that you were prescribed a pressure of 16 cm. and you have the following:
Machine: Resmed S8 Vantage EPR Auto CPAP Machine
Mask: Mirage Quattro Full Face CPAP Mask with Headgear
Software: Resmed ResScan Smart Card Reader for S8 and S8 II Machines

You're apparently using the Auto in CPAP mode as you mentioned lowering the pressure from 16 to 14......but you're still having problems with aerophagia (swallowing air).

You're in the "early" stages of your therapy.

Your wife is a "light sleeper".

Some questions and/or comments:

Have you done the "Teflon tape fix" to your Quattro mask yet?
viewtopic.php?f=1&t=33452

Proper mask sizing and adjustment are very important. I also have the Quattro, although the UMFF is my favorite, and wear them both the same way......top straps VERY loose, forehead support in the most upright position and any tension on the bottom straps.

Bed pillows can make a HUGE difference.

Not all machines (and masks) are created equal. Neither is the exhale relief (EPR or C-Flex/A-Flex). Many folks here who have used different makes/models will verify that.

When I started out, I was prescribed a pressure of 18 cm. By using my REMstar Pro 2 and the Encore Pro software, I lowered my pressure to 10 cm. and tracked my therapy. It was very close to being optimal and I eventually ended up at 12 cm.
I also use "passover" humidification (no heat).

Good luck in your quest for good therapy. It CAN take a bit of time and possibly trying different components (machines and masks) along with different settings.


Den

CharlesVer wrote:By the way, I never mentioned this before the my last post, I might as well mention it now.

My lungs feel a little like they're going to explode. I walk around and feel like I still have the mask on, like my lungs are being pressed by compressed air. My throat is similar. I think I've irritated my entire respiratory system. Is that normal?

Feeling like they are going to explode isn't how I would describe what I felt like but my pressure is at a comparatively low 8-10. Irritation to everything is very common. You have to find the right humidty setting to keep from having symptoms related to dry nose, mouth, and throat without drowning yourself in the process (one of the reasons some of us buy a lot of ayre gel and stick it in our noses, other use lanosol lanolin nipple cream for skin irritations). It does take some adjustment to air coming in at pressue, if it is really bad you will need to work with your doctor (if you have a helpful one) to find a way to get adjusted and them get to an optimum treatment pressure. Some of the folks here are extremely knowledgeable and will have better answers. Some of the folks here may know a bunch of stuff the folks in the doctors office don't know. This is a big part of our lives.

Charles there is a failure rate of something like 50 or 60 percent with cpap. I know several people with machines in their closet. This site seems to evolved (I think rightly) into a place to find out how to make it work, with a bit of "sleep-a-holics anonymous" mixed in. Imagine going to an AA meeting and talking about why it won't be your fault if you fail (I don't mean that harshly). I know this isn't a 100% infallible analogy - I just came from the doctor with some provigil because I still have some "excessive sleepiness. The drug is not something I want to take and I won't take it unless I have too. But what is important is that cpap hasn't "cured" me but even so it is helping.

Now, for some more practical stuff (some I may have forgotten or not seen 'cause it was in chat) : have you called the DRs office? It sounds simplistic, but sometimes we get machines and are left alone to deal with all of this crap by ourselves. You will get practical advice here and moral support (and chastisement), but for really serious issues and side effects you may need a doctor's help. But in the interim hang in.

TSSleepy wrote:You're here. You're trying. You're educating yourself. You're bitching and whining, which is a GOOD thing because it means you are continuing to try even though the road is rough.

I'm three months in on my treatment, and feeling great. I can't imagine sleeping without my mask. I love my mask. I love it so much that I drool all over it every night and wake up with love-lines all over my face.

But I remember how bad I felt when I hit bottom last winter. I remember how much I hated my first mask, which didn't fit quite right and constantly leaked. The sleep deprivation, the emotional and mental fatigue/rawness. The frustration. The farting and belching and cramping of my initial aerophagia.

It took a few masks and it took a few weeks and it took a lot of help and advice from people on this board...but eventually I got it under control. You may encounter some "tough love" on this board, but even "tough love" is still "love". I know it's hard, but keep working on making the treatment better, and keep trying to get used to it. It will eventually pay off for you, and a few months from now you'll look back and think, "Wow, I was a mess...I love my mask!"

As for specifics, I found that I swallowed a lot and had bad aerophagia when I started. And it didn't even occur to me (until I read your post), that most of that has gone away. I no longer feel like I am over-salivating when I put the mask on, but I did the first few weeks. And now when I swallow, my ears no longer pop and I don't feel like I'm gulping air. I do still tend to belch and fart a bit the first hour of the day, but it's not very bad anymore.

The human body is an amazing machine. Mine got used to being suffocated every night, and allowed me to semi-function with crap for REM sleep, high blood pressure, low oxygen levels, et cetera thanks to sleep apnea. It took a few weeks to get used to a pressure mask on my face, but it did eventually get used to it. It took a couple months to re-train my body that it was OK to just relax and sleep with CPAP, but I got there.

Best of luck to you!

Thanks much!

(To you and everyone here, even the ones I've "sparred" with. Like I said, I'm not really angry with anyone here, I'm angry with my the way my treatment is going. I really do plan to continue cpap.)

There are many issues on my mind as well as my body, some I haven't gotten into here.
I'm going to get away from the "anger" theme a minute, and get into some other issues I have:

1. Here's one I do not want to deal with, but long before this tragic adventure began, I was struggling financially, verging on foreclosure. Although I have insurance, every sleep-center test costs me hundreds of dollars. I'm not sure I can afford another!

Anyway, I may need another sleep test.. unless... can the primary doctor just prescribe me a BPAP machine if the CPAP continues to be an issue?

2. [edited out - I started writing about my respiratory issues, but see a new reply about that very topic, confirming what I thought about the humidifier, so I'm just going to post this and read the next reply, which looks like it has some great practical advice about gell for my nose and stuff!]

Charlie

raylo wrote:Now, for some more practical stuff (some I may have forgotten or not seen 'cause it was in chat) : have you called the DRs office? It sounds simplistic, but sometimes we get machines and are left alone to deal with all of this crap by ourselves. You will get practical advice here and moral support (and chastisement), but for really serious issues and side effects you may need a doctor's help. But in the interim hang in.

Yes.

Problem: I'm going through my primary on everything. I suspect my primary knows less about sleep apnea than I do, just from reading over the last week. My financial situation forces me to cut corners, and a $20 copay is less than a $40 copay, and I'm not entirely convinced that a specialist will have advice I can't get here or on the web.

Before getting a new prescription and sleep test, there may be some ways to use you atou-adjusting machine to help get through some fo these issues. I don't have an auto yet (I am buying one soon), so I can't help all that much, but there are plenty here who can. Who can help with some search terms or thread links for Charles?

Charles...With 10 being the absolute worst that a human being can feel and zero being the absolute best....on a 10 point scale how would you say you felt prior to Cpap treatment? On a 10 point scale how would you say you feel since you have started cpap treatment.

track wrote:Charles...With 10 being the absolute worst that a human being can feel and zero being the absolute best....on a 10 point scale how would you say you felt prior to Cpap treatment? On a 10 point scale how would you say you feel since you have started cpap treatment.

This is really, really hard!

Let's try an 100 point scale. I think more gradations necessary for the human condition.

1 is heaven.
3 is, just won a marathon.
50 is average.
100 is waterboarding, being set on fire.

I'd say 55 or 60 is me, last week, and 99 is me, this week.
I actually felt better than now when I was hospitalized with pneumonia a few years ago!

I'd have been a 35 last week if I wasn't so darn tired.
Then again, I'm an optimist.

All right. I'd better call my doctor, and may need to visit him.

Just googled CPAP side effects. Saw this on one site.

Call Your Doctor If Any of the Following Occurs

* Shortness of breath
* Chest pain
* Dizziness or lightheadedness

I believe I have all of those things.
Though I know the chest pain is in my lungs, not my heart.

Plus, and this is very weird, but I'm sitting here, and I actually feel
like I have my CPAP on and running right now, though I haven't used it
since I took it off last night at 12:30.