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

Hi Charlie,

I am new to this whole thing to and am facing my own struggles. I don't know if what I say will help and I am sure that some here won't agree with what is said. However, I think that it isn't all about attitude. Sometimes, just sometimes, no matter how good your attitude is you are still going to face challenges. I applaud you for recognizing those challenges and being willing to try to work through them.

I will tell you what my RT told me. She said that she has people that have to work up to a full nights sleep with the mask on. She told me if need be start with wearing it without turning the pressure on for 20 minutes for a couple of nights. This helps you to adjust to how the mask feels. Then to wear it with the pressure going for 20 minutes for a couple of nights while you read or watch TV (yes I know the bed is supposed to be for sleeping and sex but let's face it that isn't all that most people do). Then gradually increase the time each night until eventually you sleep through the night with it on.

Does your maching have a ramp feature? You might try this as well.

Maybe you just need a different mask.

I don't know if I have helped at all. I just want you to know that you aren't alone in this journey.

Charlie,

I don't think I was involved in those conversations, but I very well could have been, because when I post "suggestions" my intent is usually to mention some things to consider, expecting the reader to dismiss those things that aren't applicable to their specific situation. Any time there are generalities, there will be some people that are not helped by even the sagest words of wisdom.

Sometimes on here I read a post that makes me stop and take stock of things I say. One was a thread discussing machine noise, and someone expressed their frustration of people with low pressures comparing their machine sounds to those with high pressures. Guilty. And there was the thread of someone with a heightened sensitivity to sound that made me again aware that while there are commonalities, each experience really can be very different for so many reasons. There are some principles that are always true, but still may not be the end-all answer for everyone. I personally see your frustrations as an understandable result of the experiences you've described.

When I had a pressure sore that was angry, red, swollen, and filled with "yuck" there was no attitude adjustment that could make me tolerate the pain of putting that mask back on. I've been known to throw a mask against the wall in the middle of the night. At one time I quit using cpap altogether. I can't feel what you feel, but I can identify with being utterly frustrated and depleted.

Now, here's the part where I throw out an opinion based on my experience, and you can take it or toss it. Dropping your pressure in half seems to me to be a recipe for more problems. It may help with the air in the belly, but will likely increase your apnea events. Yes, you're only a week in and may resolve your issues with a better mask fit, etc., but I'm thinking going ahead and making a machine change if you see it coming down the pike might be a good next step.

Whatever you do decide to do as your next steps, I wish you success.

Kathy

Thanks Kathy,

Actually, here are the details of my idea:

Step 1: Cut my pressure all the way down to 8.
Step 2: (If that works) Next day, bump up to 9.
Step 3: (If that works) Next day, bump up to 10.

(Continue until I'm back up to 16.)

This, under the theory that my problem is "adjustment," and not chronic/permanent.

Charlie

CharlesVer wrote:Thanks Kathy,

Actually, here are the details of my idea:

Step 1: Cut my pressure all the way down to 8.
Step 2: (If that works) Next day, bump up to 9.
Step 3: (If that works) Next day, bump up to 10.

(Continue until I'm back up to 16.)

This, under the theory that my problem is "adjustment," and not chronic/permanent.

Charlie

Wrong approach.

First - look at your data and make sure you are not leaking therapy.
Second - after making certain leaks are under control, only make changes to pressure settings after collecting 1 week or more of efficacy data.

Changing pressure on a dialy basis is wrong and you will only waste time and extend your so-called torture ... further, changing pressure without having a properly fitted mask will just mean that you go back to square one and start over, not pass go, not collect CPAP benefits.

CharlesVer wrote:Thanks Kathy,

Actually, here are the details of my idea:

Step 1: Cut my pressure all the way down to 8.
Step 2: (If that works) Next day, bump up to 9.
Step 3: (If that works) Next day, bump up to 10.

(Continue until I'm back up to 16.)

This, under the theory that my problem is "adjustment," and not chronic/permanent.

Charlie

Charles, it appears from your profile that your machine is an auto adjusting machine, which means that you should be able to set it to a range of pressures. If I understand correctly it should start at the lowest pressure and climb if "flow limitations/hypopneas" are detected. There may be a ramp feature on your machine, so that you can start on an even lower pressure (is this available on the machine that Charles has?). Anyway this might allow you to see if lower pressures are going to work for you at all or at least give you a way of building up to it, without sacrificing the therapy. You can start to gather data about what works for you and what doesn't. You can compare pressures and AHI rates to how you feel and work more effectively towards a better solution for you. There is another thread on the front page that talks a little bit about setting pressures on auto machines and many more to search for.

Given those numbers you need to take a step back and forget the cpap until you get rested. Cpap is supposed to help you not kill you...which is what it's doing now. Maybe ease into it by putting the mask on for 15 minutes in the evening. No reason to put yourself in a worse position than you were before trying cpap. Maybe only try it on weekends..not on a work night until you get some sense of comfort with it.

I have a small point to make about this (very good, very valid) point, which was good information to know about this site.

raylo wrote: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

What I'm about to say is difficult for many people to understand, but nevertheless true.

Just as every person responds differently to air pressure coming through a machine, and just as different people respond differently to different treatments, different people respond differently to "outside" pressures, peer pressures, including the type of pressure in groups like A.A.

I am the type of person who, if I was an Alcoholic, assuming things I have heard about A.A. are true, I would certainly fail at Alcoholics Anonymous. This is not to say that I'd be stuck forever in the bottle. This is to say that I would need to find a different solution to my drinking disorder. Oddly enough, a kind word from a friend and/or my own determination and cold turkey would have greater odds of getting me to stop drinking.

I know that's not true of most people. It's my personality.

To illustrate: When I was in high school, I got mostly A's and B's. But I almost failed history, one of my favorite subjects. 1st marking period, D. 2nd marking period, F. D on the final exam, and that was a gift since I didn't answer half the questions.

Why? The teacher was very strict. Demanding. He put pressure on me, and I felt incapable, inferior. But I did work, very hard. I just couldn't do it.

One semester later, I had a different teacher. The material was just as diffecult if not more diffecult. The teacher, however, was gentle and soft-spoken. Very little pressure. Straight A's, instantly.

Ultimately, on retrospect, it was the teacher whose teaching style failed me. It wasn't me who almost failed. Some people need strict pressure or they'll get lazy. Some people need encouragement and fall apart or become defiant under strict pressure. I'm of the second type. Again, we're all different and we all respond differently.

There were moments during these discussions, I was almost tempted to say, "You convinced me, I'm quitting CPAP" in direct response to claims it's my attitude. I was frustrated, and felt under pressure, and was actually made to feel more wanting to quit, when really, I'm actually bound and determined to do my best to continue. Naturally, I wouldn't do that because I'm not going to let some people on a board negatively influence decisions about my health.

My point here is that, for some people, pressure has the opposite effect.

(May be I need a CPAP machine that sucks in instead of blowing out -- HA!)

Don't worry about me quitting -- I may take off my mask for a night, here or there, but I'm bound and determined. There are actually too many important things I need to do, to let sleep apnea rot away take me without a fight.

I haven't told the board this, but I'm a computer programmer (RPG on an AS/400) and also an aspiring author. I need my mental alertness, both in order to do my job properly, and in order to finish my book, already written in first draft and my second draft has been slow in coming, largely as a result of my sleep apnea.

In the end, I cannot, not get my sleep apnea treated, whether by CPAP, BIPAP, dental implants, surgery.

I'll try standing on my head with two CPAP machines before I'll just give up.
I may pause, I may take off my mask once and catch a wink after a week of sleep deprivation becomes too much to bear, but I will put the mask on again.

Pressure won't make me do it. I'll make me do it. Pressure can only make me want to quit, which I never wanted to do in the first place. (Which I won't, don't worry about that.)

(Similarly, I think if I was an alcoholic on the verge of quitting, a harassing A.A. person would make me quickly run to get a bottle, whereas without the A.A. person I'd probably just quit drinking!)

Not saying pressure doesn't work for some people, nor am I criticizing the fine and effective work that A.A. does with other people. I'm just one of those oddball personality type, one of those 2% of the population that, when I take one of those personality tests they say, "Wow, this guy is really different personality-wise than other people."

DreamStalker wrote:

CharlesVer wrote:Thanks Kathy,

Actually, here are the details of my idea:

Step 1: Cut my pressure all the way down to 8.
Step 2: (If that works) Next day, bump up to 9.
Step 3: (If that works) Next day, bump up to 10.

(Continue until I'm back up to 16.)

This, under the theory that my problem is "adjustment," and not chronic/permanent.

Charlie

Wrong approach.

First - look at your data and make sure you are not leaking therapy.
Second - after making certain leaks are under control, only make changes to pressure settings after collecting 1 week or more of efficacy data.

Changing pressure on a dialy basis is wrong and you will only waste time and extend your so-called torture ... further, changing pressure without having a properly fitted mask will just mean that you go back to square one and start over, not pass go, not collect CPAP benefits.

Okay. I'm open for suggestions.

I don't think leaks are my biggest issue. My biggest issues are, air-swallowing and respiratory irritation. It's why I can't sleep and why I feel like crap.

The respiratory irritation is making me think I do need a temporary break from CPAP.
Controlling the air swallowing is the reason I want to gradually "work my way up."

I'm already ordering a new mask, a nasal version, to control any leaks I'm having.

Charlie

The respiratory irritation is making me think I do need a temporary break from CPAP.
Controlling the air swallowing is the reason I want to gradually "work my way up."

A lot of people experience the air swallowing...you can manage it or learn to live with it...that's what I and many others have done. The respiratory irritation is a much more worrisome problem from my perspective and needs to be healed up before engaging in cpap again...JMO.

Hi Charles
I am the "I love my mask" lady. It is a form of self hypnosis. I learned it to deal with my migraines (2-4 days of pain where the slightest noise, light smell make me puke my guts out and when it wasn't as bad as that I had to spend the day staring at a computer screen - little words in lights) There were days when I just wanted to swallow the whole bottle of pain killers and be done with it but like you I had a small daugther I didn't want to do that to her. (Then there were the happy pills they gave me which worked so well I flushed them down the toilet.)

Yes you can hate your mask but to be able to use it effectively quicker you have to learn to love it. Imagine an olympic athlete who hated his sport, will he do as well as some one who loves it? or Try riding a horse while you are up tight and tense - it ain't gonna work - the horse knows just the same way right now your sub-conscious mind knows. Ones sub-conscious mind works at the level of a 3 year old - it only understands positive in the present commands.

try this link http://www.guidetopsychology.com/autogen.htm
It teaches relaxation techniques which will help you sleep. If it can get me through child birth and migraines the technique can help you relax enough to sleep.

Yes vent your anger but not at the mask, not at the equipment - use another outlet - I made some really nasty ugly dolls which you won't find on my website, they would give you night mares. I worked out with weights and ran endless miles.
And with regard to the horse - it took me 3 months of trying to get back on the horse, it wasn't until I was able to let go of my fear (not to control and swallow it) that the F---g horse would listen to me.

None of this post has anything to do with "attitude" it has to do with reprogramming your sub conscious mind, with taking control over your internal software.


After 15 years of pain management dealing with the mask was a breeze for me - I had the tools at my finger tips and the help of this forum to show me where to use them. I am offering the tools for you to use it is your choice whether or not to use them.

track wrote:Given those numbers you need to take a step back and forget the cpap until you get rested. Cpap is supposed to help you not kill you...which is what it's doing now. Maybe ease into it by putting the mask on for 15 minutes in the evening. No reason to put yourself in a worse position than you were before trying cpap. Maybe only try it on weekends..not on a work night until you get some sense of comfort with it.

THANK YOU! Because frankly, I think it IS killing me!

I'm going to call my doctor, see what I can do.

My idea since last night was to try working my way into it. But the way my chest, throat and lungs feel today, and with my light-headedness, I may really need a break from therapy.

Frankly, and I'm not kidding about this, while I hope it's not true, the way my chest feels, I wouldn't be at all surprised if I go to the doctor, he sends me to the E.R., and they admit me. I hope not, and I'm not saying it will happen, but man, I'm gasping for air and I'm not even ON the CPAP! While some were earlier telling me, essentially, "Walk it off, soldier!"

Charlie

Sounds like you need to run not walk to the doctor's office and have the respiratory thing checked out. It might not even be related to cpap.

.

I have a call in to my doctor, he's going to call me back, I'm going to arrange to go in tonight.

Thanks,
Charlie

PS. For BlackSpinner, thanks for your well intended advice. However, right now, I think my issues are more physiological, physical in nature than psychological. I think I'm having pain because my body is telling me something's wrong, and I need to have that addressed.

CharlesVer wrote:

DreamStalker wrote:

CharlesVer wrote:Thanks Kathy,

Actually, here are the details of my idea:

Step 1: Cut my pressure all the way down to 8.
Step 2: (If that works) Next day, bump up to 9.
Step 3: (If that works) Next day, bump up to 10.

(Continue until I'm back up to 16.)

This, under the theory that my problem is "adjustment," and not chronic/permanent.

Charlie

Wrong approach.

First - look at your data and make sure you are not leaking therapy.
Second - after making certain leaks are under control, only make changes to pressure settings after collecting 1 week or more of efficacy data.

Changing pressure on a dialy basis is wrong and you will only waste time and extend your so-called torture ... further, changing pressure without having a properly fitted mask will just mean that you go back to square one and start over, not pass go, not collect CPAP benefits.

Okay. I'm open for suggestions.

I don't think leaks are my biggest issue. My biggest issues are, air-swallowing and respiratory irritation. It's why I can't sleep and why I feel like crap.

The respiratory irritation is making me think I do need a temporary break from CPAP.
Controlling the air swallowing is the reason I want to gradually "work my way up."

I'm already ordering a new mask, a nasal version, to control any leaks I'm having.

Charlie

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

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

Is your doc aware of your air swallowing? 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 do you mean exactly by respiratory irritation? Sinus congestion, coughing, wheezing?

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

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

Yes, I believe so.

DreamStalker wrote: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.

DreamStalker wrote:Is your doc aware of your air swallowing?

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

DreamStalker wrote: 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?

DreamStalker wrote: 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.

DreamStalker wrote: 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.