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

preemiern wrote:Charles--I certainly did not mean any offense to you in my post...I will not apologize, as I did not write that post with any malice intended. I was only simply stating that I hope you soon find relief and can look back on this beginning time as a "bump in the road" so to speak. I am hoping that the comments you made in response to my post is due to your sleep deprivation. I was simply taking some time out of my day to wish you well and to attempt to encourage you that this will get better

Well said Cindy. I am newbie here and even I knew what your intended thoughts were. I have also been following Charles' journey and have pretty much picked up on his over all attitude. He replied just as I thought he would. If you hadn't stood up for yourself, I was going to stick my nose in where it didn't belong because I have been biting my fingernails off to keep from saying something. I don't believe I have seen such negativity or such a large chip on someone's shoulder, in a very long time. Like you, I also hope his hostility and rudeness to those trying to offer encouragement, stems from sleep deprivation. If not, he is the poster child for one unhappy person and likely will have a very difficult road no matter where it leads.
Brenda

CharlesVer wrote: No offense, but it sounding like an addiction! Do you get high off it or something? Charlie

....ah....yea....Charlie....
I'm high.....but, I'm not high on false drugs....
no....I'm high on the real things in life.
A clean windshield.
A shoe shine....
and a full tank of gas.

I'm high on oxygen...
I'm high on a brain that has cognitive function, again...
I'm high on being alert at my job...
I'm high on being able to remember things, again...
I'm high on being able to ride my bike and recover, overnight....
I'm high on dreaming, wild and crazy dreams.....

....yea, I'm addicted....to life.


While one who sings with his tongue on fire
Gargles in the rat race choir
Bent out of shape from society's pliers
Cares not to come up any higher
But rather get you down in the hole
That he's in.
---Bob Dylan

Wow...Charles, I "love" my swift lt...in comparison to the other masks I've tried. I "love" my cpap because it is bringing me back toward normal, healthy, wakeful days. I "hate" having to drag my machine every where to sleep. I "hate" having to wear a mask hooked to a machine and a chins strap - I long for the ability to stretch out and nap wherever I am. Oh, well. Those are the breaks and the truth for me. I have sleep apnea. The recognized treatment for it, and the one prescribed by a highly educated and recommended pulmonologist who now specializes in sleep (board certified and all), is cpap. I am avoiding drugs that have been talked about as an alternative (or additional therapy) for me...because I want to avoid anything that could be an addiction. Cpap is a way of allowing air to get into and out of my lungs. It isn't a sport, a game, a hobby, a recreation, a high, an intellectual exercise, or any else esoteric. It is a way of allowing air into and out of my lungs so that I can get sleep and live a more normal life.

Sleep apnea can disrupt sleep to the point of chronic sleep deprevation. Not using the therapy is dooming it to failure. This website is a place where people come together to talk about how to make the therapy effective, because that is a part that is deficient in our medical system. It is also important to note that not using the therapy, even under some adverse conditions will cause more detriment to a persons health. When people encourage others to continue therapy, they are trying to say "do not cause yourself more damage." You may be a rare case where somehow cpap really is causing you great pain - okay - that doesn't mean the rest of us, who have lived through years of sleep deprivation are kooky hose suckers looking for a "high."

One time, when I had seriously injured my wrist, I said "I love my new brace." I didn't mean I got high off of it. I meant that it was less heavy and bulky - I could function better with it.

preemiern wrote:Charles--I certainly did not mean any offense to you in my post...I will not apologize, as I did not write that post with any malice intended. I was only simply stating that I hope you soon find relief and can look back on this beginning time as a "bump in the road" so to speak.

Thanks, and sorry if I grumped-out on you, and others here.

It's just that, I'm still feeling painful effects three days after stopping CPAP, and just beginning to get over a week's total sleep deprivation. The chest pain has not gone away. I'm seriously afraid I may have damaged my lungs.

I'm fearing and suspecting that, after CPAP forced air down my throat, I burped up stomach acid and then the CPAP proceeded to push that stomach acid right into my lungs. I'm fearing the worst: that by the process I just described, one week of CPAP may have done my lungs more permanent damage than a lifetime of smoking would have done. That I'm a dead man walking as a result of 1 week of CPAP.

I'll be honest: I'm scared. I have to get past my concern for my lungs -- hopefully find out that my worst fears are not confirmed, but refuted -- and then, I can worry about my sleep apnea.

I know your intentions are best... but...

preemiern wrote: If I can give just one new person here some encouragement to put that mask on just one more night, perhaps that person will not go to sleep and never wake up.

Or, alternatively, someone with my exact symptoms might continue using CPAP and burn out their lungs, because they took your advice and tried, just one more night.

Or, alternatively, someone with my exact symptoms might continue using CPAP and spend a week of total sleep deprivation as I did, and attempt to go to work as I did, and kill themselves and twelve other people when they fall asleep at the wheel, as I might have done but thankfully did not.

People need to listen to their bodies. They need to talk to their doctors.

A person SHOULD NOT, say, put on the mask, say, "Oh, this is uncomfortable," take it off and never try again.

However, a person SHOULD NOT endure a week of almost total sleep deprivation, swallowing air over and over again, severe chest pains, disorientation, etc. That person needs to consult the doctor, IMMEDIATELY.

Pugsy wrote:

preemiern wrote:Charles--I certainly did not mean any offense to you in my post...I will not apologize, as I did not write that post with any malice intended. I was only simply stating that I hope you soon find relief and can look back on this beginning time as a "bump in the road" so to speak. I am hoping that the comments you made in response to my post is due to your sleep deprivation. I was simply taking some time out of my day to wish you well and to attempt to encourage you that this will get better

Well said Cindy. I am newbie here and even I knew what your intended thoughts were. I have also been following Charles' journey and have pretty much picked up on his over all attitude. He replied just as I thought he would. If you hadn't stood up for yourself, I was going to stick my nose in where it didn't belong because I have been biting my fingernails off to keep from saying something. I don't believe I have seen such negativity or such a large chip on someone's shoulder, in a very long time. Like you, I also hope his hostility and rudeness to those trying to offer encouragement, stems from sleep deprivation. If not, he is the poster child for one unhappy person and likely will have a very difficult road no matter where it leads.
Brenda

Yes, Brenda. I'm also a terrible, horrible person.

I am rude, crude and socially unacceptable.
In fact, I have no redeeming qualities whatsoever.

If the CPAP burned out my lungs, and killed me, it might be a good thing.
I'm not worthy of being on this planet with such wonderfully kind, compassionate, giving and loving persons as yourself.

You can put me on a poster and make that my label.

"Rude, crude, socially unacceptable person, who was thankfully killed by a CPAP machine, and the world is better off without him."

I'm glad you were able to psychoanalyze me and discern everything there is to know about me, based on reading a few posts. I'm a totally miserable person, nobody likes me, I have no friends, no family, I make everyone miserable everywhere I go, because I'm just that kind of person. I never laugh or have fun, and I never make anyone else happy either. I'm sure you got that from my posts. It's also true that, when I finish posting, I will go into a closet where I hang upside down, fold up my bat-wings, and then, at night, I fly out and drink human blood. But enough about me, let's talk about my family. Do you want to know when I stopped beating my wife?

raylo wrote:Wow...Charles, I "love" my swift lt...in comparison to the other masks I've tried. I "love" my cpap because it is bringing me back toward normal, healthy, wakeful days. I "hate" having to drag my machine every where to sleep. I "hate" having to wear a mask hooked to a machine and a chins strap - I long for the ability to stretch out and nap wherever I am. Oh, well. Those are the breaks and the truth for me. I have sleep apnea. The recognized treatment for it, and the one prescribed by a highly educated and recommended pulmonologist who now specializes in sleep (board certified and all), is cpap. I am avoiding drugs that have been talked about as an alternative (or additional therapy) for me...because I want to avoid anything that could be an addiction. Cpap is a way of allowing air to get into and out of my lungs. It isn't a sport, a game, a hobby, a recreation, a high, an intellectual exercise, or any else esoteric. It is a way of allowing air into and out of my lungs so that I can get sleep and live a more normal life.

Sleep apnea can disrupt sleep to the point of chronic sleep deprevation. Not using the therapy is dooming it to failure. This website is a place where people come together to talk about how to make the therapy effective, because that is a part that is deficient in our medical system. It is also important to note that not using the therapy, even under some adverse conditions will cause more detriment to a persons health. When people encourage others to continue therapy, they are trying to say "do not cause yourself more damage." You may be a rare case where somehow cpap really is causing you great pain - okay - that doesn't mean the rest of us, who have lived through years of sleep deprivation are kooky hose suckers looking for a "high."

One time, when I had seriously injured my wrist, I said "I love my new brace." I didn't mean I got high off of it. I meant that it was less heavy and bulky - I could function better with it.

Thanks for the clarification, and again, sorry if I insulted you. I was trying to understand why people are more concerned that I use the CPAP REGARDLESS of what it's doing to me, with NO concern about my actual health condition, trying to pressure me to use CPAP even when it may be killing me.

My own experience of one week of CPAP was a much more severe sleep deprivation and other symptoms which included chest pains that I currently fear may be indicative of permanent lung damage. I will have to find out.

I love life as much as anyone. What I want more than anything is to cure my sleep apnea. And not to kill myself in the process. I do not take my sleep apnea lightly, and I do not have a "bad attitude."

Nor am I some rude and horrible person as some would suggest. In fact, a few days ago, I was chatting happily with people here who seemed to like me.

It doesn't seem to matter to some here the fear I'm going through, the pains in my chest I'm still experiencing... if I can't dance merrily and sing my love for the CPAP, then I'm just morally reprehensible, seems to be the attitude of some, even knowing from my posts what the CPAP has done to me.

preemiern wrote:I find it offensive that you would attack me the way that you did in your post.

I don't mean to attack you or anyone.

I'm scared, suffering, and trying to understand.

And, frankly, perplexed by the whole phenomena of CPAP. Baffled by this whole 'love' thing, love of CPAP, that is, that appeared to me to be over love of life. The poem by carbonman was actually very eloquent, and a very good answer to my question.

I'm not an evil person.

I hope, when those of you who are angry with me, get beyond that anger, that you learn a very valuable lesson, because I don't want to see others suffer what I have: When someone says they are experiencing extreme symtoms, PLEASE advice them to see their doctor, PLEASE don't repeatedly say, "Don't stop the CPAP, don't stop the CPAP, just tell yourself you love it," because it's entirely possible that that person's symptoms are a sign of something serious going on. I may have called the doctor sooner, if people didn't keep telling me, "It's a minor bump, it's temporary, just keep doing it, just keep doing it."

Most people living with sleep apnea have lived with it a long time. If someone is complaining about an uncomfortable mask, okay, tell them how to fix their mask. But if someone is having SEVERE symptoms, they NEED to see a doctor, and they're not going to die if they take a step back, a night off. I probably had sleep apnea for years before being diagnosed. It's not as if, one or two nights or even a week without a mask is going to kill me -- when my symptoms say that the mask itself may be killing me.

I also can't express this enough: What I've experience is NOT psychological. What I've experienced is PHYSICAL. Requiring a doctor's serious care.

Charlie

I loved your article. Of course you are right. Hope it works for you, it does for me. I don't love my mask, I hate it but the damn thing works. I also had colitus and had to get an illiostomy when I was just 27. Damn I hate that bag. I hate it every day of my life but it works. So now I have this bag and a mask. What's next? It's hard to believe that I'm actually quite healthy now even though I look like some sort of freak when I go to bed. Oh well, and so it goes. Best of luck to you and write a book sometime, your good.[quote="CharlesVer"]Venting my anger:

CharlesVer wrote:

preemiern wrote:I find it offensive that you would attack me the way that you did in your post.

I don't mean to attack you or anyone.

I'm scared, suffering, and trying to understand.

And, frankly, perplexed by the whole phenomena of CPAP. Baffled by this whole 'love' thing, love of CPAP, that is, that appeared to me to be over love of life. The poem by carbonman was actually very eloquent.

I'm not an evil person.

When I don't use cpap I stop breathing at night more times for longer durations. I become oxygen deprived. It is love of breathing, love of sufficient oxygen, and love of sufficient sleep that I feel. I suspect that this is true of every person who has expressed "love of cpap."

There are studies that strongly suggest that mortality rates for compliant cpap users are the same as the general population, but significantly higher for SA sufferers who are not compliant cpap users.

Cpap allows us life.

raylo wrote:

CharlesVer wrote:

preemiern wrote:I find it offensive that you would attack me the way that you did in your post.

I don't mean to attack you or anyone.

I'm scared, suffering, and trying to understand.

And, frankly, perplexed by the whole phenomena of CPAP. Baffled by this whole 'love' thing, love of CPAP, that is, that appeared to me to be over love of life. The poem by carbonman was actually very eloquent.

I'm not an evil person.

When I don't use cpap I stop breathing at night more times for longer durations. I become oxygen deprived. It is love of breathing, love of sufficient oxygen, and love of sufficient sleep that I feel. I suspect that this is true of every person who has expressed "love of cpap."

There are studies that strongly suggest that mortality rates for compliant cpap users are the same as the general population, but significantly higher for SA sufferers who are not compliant cpap users.

Cpap allows us life.

But what is the cause of the mortality rate among SA sufferers who are not compliant?

The assumption being made is that non-compliance is the cause of the mortality.

I propose instead, that something serious is going on with (at least some of) these individuals, including ME, and that THAT SERIOUS THING that's going on, is the cause of BOTH the non-compliance AND the mortality rate, and possibly, that the period of USE among the non-compliant may be a contributing factor -- IF, for example, the CPAP caused the person to burp up and breathe in stomach acid, they would be non-compliant (because no human being can bear that pain continually) and also, have a shorter life span (because they burned out their lungs).

Have any statistics been done comparing mortality rates of :

(1) People who have sleep apnea and never tried CPAP.
(2) People who have sleep apnea, tried CPAP and could not maintain compliance.

I suspect group 2 would have a higher mortality rate than group 1.

Reason being that CPAP failure either is indicative of a greater problem than just sleep apnea, or the CPAP itself caused a problem in these individuals, which also caused the lack of compliance, and may have been a contributing factor in the mortality.

ANY properly performed scientific study requires a control group.

IN THIS CASE, group 1 is the real control group, not the general population.

In fact, now that I think of it, technically, to have a proper experiment with a control group, you'd need a large group of people with sleep apnea, half of them, would have to have the CPAP machine, and the other half would have to BELIEVE they have the CPAP, but not really. I'm not sure how that would be accomplished, to create the illusion that a CPAP is blowing air into you when it's not really. But that's how such experiments are performed, with placebo. For example, they give "sugar pills" to have the group and a medication to the other half.

CharlesVer wrote:

raylo wrote:

CharlesVer wrote:

preemiern wrote:I find it offensive that you would attack me the way that you did in your post.

I don't mean to attack you or anyone.

I'm scared, suffering, and trying to understand.

And, frankly, perplexed by the whole phenomena of CPAP. Baffled by this whole 'love' thing, love of CPAP, that is, that appeared to me to be over love of life. The poem by carbonman was actually very eloquent.

I'm not an evil person.

When I don't use cpap I stop breathing at night more times for longer durations. I become oxygen deprived. It is love of breathing, love of sufficient oxygen, and love of sufficient sleep that I feel. I suspect that this is true of every person who has expressed "love of cpap."

There are studies that strongly suggest that mortality rates for compliant cpap users are the same as the general population, but significantly higher for SA sufferers who are not compliant cpap users.

Cpap allows us life.

But what is the cause of the mortality rate among SA sufferers who are not compliant?

The assumption being made is that non-compliance is the cause of the mortality.

I propose instead, that something serious is going on with (at least some of) these individuals, including ME, and that THAT SERIOUS THING that's going on, is the cause of BOTH the non-compliance AND the mortality rate, and possibly, that the period of USE among the non-compliant may be a contributing factor -- IF, for example, the CPAP caused the person to burp up and breathe in stomach acid, they would be non-compliant (because no human being can bear that pain continually) and also, have a shorter life span (because they burned out their lungs).

The mortality comes from the whole not breathing and sleeping thing. Heart disease and other associated conditions. I wasn't talking about studies of compliance, but studies of the health risks of untreated apnea. Here is an article about one:
http://www.talkaboutsleep.com/sleep-dis ... ract76.htm

I haven't found any mention of the type of side effects that you describe, or at least serious enough to put a life at risk, but I am not a professional researcher, doctor, or academic. My best guess (which is only a guess from a non-medical professional) is that you should see your doctor and get a sleep doctor and/or pulmonologist (my sleep doctor is both) involved as soon as possible. Your arguing about cpap is probably pointless until you get some real answers about what is going with you.

CharlesVer wrote:Yes, Brenda. I'm also a terrible, horrible person.

I am rude, crude and socially unacceptable.
In fact, I have no redeeming qualities whatsoever.

If the CPAP burned out my lungs, and killed me, it might be a good thing.
I'm not worthy of being on this planet with such wonderfully kind, compassionate, giving and loving persons as yourself.

You can put me on a poster and make that my label.

"Rude, crude, socially unacceptable person, who was thankfully killed by a CPAP machine, and the world is better off without him."

I wasn't going to address you personally Charles but since you have seen fit to put words in my mouth, I guess I will.

Like you, I also hope his hostility and rudeness to those trying to offer encouragement, stems from sleep deprivation

This is the only part of my comments that mentioned rudeness and in the same breath I also said that I hoped that your sleep deprivation has caused this attitude. All the other stuff you manufactured on your own and is completely untrue and uncalled for.

It doesn't seem to matter if someone attempts to do the "tough love" approach or the " poor atta boy" approach with you. You already have your mind made up as to the negative intent or negative outcome and can't see the well intentioned thoughts that are being sent to you. I will not attempt either because I know you don't want to hear it from me. I also will not return your sarcasm with like sarcasm from me. It would be counterproductive and a waste of my time.

Attitude is so very important to any medical treatment and I sincerely hope that something occurs to enable you to find the answers that you need to get yourself on track to improving your health. I would never wish death and misfortune on anyone. Why you would even bring that up is beyond my understanding. I wish I could send you some positive energy to counteract the negative but that is something that has to come from within yourself. I do wish you the best in your quest for answers.
Regards,
Brenda

raylo wrote: I haven't found any mention of the type of side effects that you describe, or at least serious enough to put a life at risk, but I am not a professional researcher, doctor, or academic. My best guess (which is only a guess from a non-medical professional) is that you should see your doctor and get a sleep doctor and/or pulmonologist (my sleep doctor is both) involved as soon as possible. Your arguing about cpap is probably pointless until you get some real answers about what is going with you.

This discussion has been ongoing for over a week.

I've seen my doctor and he is going to consult with the pulmonologist and arrange an appointment for me. By his instructions, I've stopped the CPAP.

It's not pointless for this reason:

For the last week, I've been suffering pain I wouldn't wish on my worst enemy, including almost total sleep deprivation, swallowing air, nausea, severe chest and throat pain, light-headedness, disorientation, and a host of other symptoms. It was after a google search brought me to a site that said, "If you have any of these symptoms, call your doctor immediately," that I actually called my doctor.

The advice I kept getting here was : "Stick with it. Don't stop. It goes away. You'll feel great!"

The advice I should have gotten here was: "Call your doctor."

I do not want anyone to go through what I've gone through.

Please, if you encounter someone with severe symptoms, tell them to call their doctor.

If one person here listens to that advice, then it's not pointless for me to continue talking about it now.

CPAP forces nothing down. It only stents your throat open. You most likely already had the GERD condition before you started CPAP ... CPAP does not cause GERD, may only make you aware of it if you are not already.

I really don't think you got stomach acid in your lungs either or you would be in ICU right now and unable to breathe for the coughing. More likely you burned your esophagus ... you should have already taken some TUMS or other favorite antacid OTC med.

I think you are still in denial about having to use CPAP for the rest of your life and you are looking for an out and over-reacting over your doc's ... Ummm, "attitude".

If your doc has sent you to go see your sleep "specialist" for your GERD ... that was a dumb "attitude"! You need to go see a gastro doc for the GERD.

Like I said before ... YOU need to take charge of your own health but I guess YOU need to accept your condition(s) first ... or you can put all your hope in your doc and his "specialist" referals.

Folks here are just trying to open your eyes so that you can find your way to better health ... but you have to make the realization yourself.

Best wishes!

Charles,

I think the reason some people have been somewhat defensive in their responses is that your initial posts in this thread seemed to be 'down' on CPAP. After all, this is a CPAP support forum. It kind of makes me think of posting on a body art site that standard tattoo ink caused you to have a bad allergic reaction and then saying that the tattoo (or tattoo's ink) is at fault. In reality, it would be your body's reaction to the ink that would be at fault. Now, I don't have tattoo's (not that it matters), but this is the best analogy I could think of. In the case of my medical issues, when one drug stops working, or never works initially, I would never blame it on the drug. The 'fault' would lie with something about my body's chemistry, genetics, etc.

Personally, I'd really like to hear the causes of what you've been experiencing lately. Hopefully, your Dr(s) can get it sorted out quickly.

David