CPAPtalk.com

CPAP101: Todzo makes a good point on just putting a mask on versus the experience of doing it while
stressed and sleep-deprived, to say nothing of high pressure and no exhale relief.
Add to that the misery of having a mask that DOES-NOT-FIT, or is improperly adjusted, and I think you might get the picture.
There are quite a few variables, and many are far from ideal.
My hat is off to those here who've had to endure far more than I.

chunkyfrog wrote:CPAP101: Todzo makes a good point on just putting a mask on versus the experience of doing it while
stressed and sleep-deprived, to say nothing of high pressure and no exhale relief.
Add to that the misery of having a mask that DOES-NOT-FIT, or is improperly adjusted, and I think you might get the picture.
There are quite a few variables, and many are far from ideal.
My hat is off to those here who've had to endure far more than I.

I'll pile on here. All kinds of crazy things go through your mind when you are sleep deprived. I would not have admitted that several weeks ago, but I see it now that the fog is lifting. I am not an emotional person but I remember that first night getting upset to tears because I couldn't make that damn mask work. I wanted so much to get better; the tendency though is to extrapolate your experience to the point of utter desperation that you will never get better. I am sure many of us went through a similar experience. If you aren't suffering the consequences of poor sleep it would be very hard to relate such things. My $0.02.

Most people I see have a sleep debt the size of our national dept. AHI 35or higher Severe OSA. Others are like myself, a little on the chubby side sever snoring or an AHI 5-15 Mild. So its far harder to tolerate. I had a guy one time who feel asleep on our recliner and we had to wake him up. He is the 1% who get use to before they home. 40% of people who get prescribed CPAP actually use them on a regular basis. Everyone can joke and make sarcastic remarks. At the end of the day I'm not promoting my business or relishing in the fact I work for a CPAP company. This is about picking the minds of actual CPAP users so that I can better relate to Joe and Molly who have been scared into CPAP by there doctor. I AM HER TO HELP!!! Sorry i'm not good at these quotes everyone does here or a college grad. If it wasn't for spell check I would be crucified with the rest. I just attend The University of CPAP and happen to be a student of the trade. Hey if it doesn't apply read on right, that's what you guys tough me. I do know what its like to not sleep ask my two daughters 4, 6. I love to help and blessed to be in trade that affords me the opportunity to do so. CPAPTALK. not CPAPUSERTALK. Dang I better get the rights to that.

In my experience, different people have different priorities and therefore, what is most important may differ from individual to individual.

I was extremely fortunate in terms of how my introduction to being a hosehead went.

I was directed to this Forum by a friend who told me, "CPAPTalk is not your average CPAP Forum -- but the people there are what all CPAPers should be like."

The first thing I learned was that I wanted a machine which had efficacy data. The second thing I learned was that the mask was the key to successful therapy.

With that in mind, I called the sleep center where I was to have my titration and asked about trying on masks in advance of the actual titration so I could find one which worked. Their mask specialist was very pleased, and spent about three hours with me, trying masks under pressure. (We also determined that I couldn't handle single pressure, and would need bi-level.) The mask selected that day was the one I used for my titration, and is one of two which I use today on a regular basis.

With a mask which worked, and efficacy data, I was able to determine, after I got my machine, that the prescribed pressures weren't working. I discussed this with the RT and my doctor, and my pressures were formally changed to the ones I use today.

Both the RT and the doc accepted that I was more knowledgeable than the average new hosehead, and treated me accordingly.

Now if I could just get the DME to fill orders accurately!

CPAP101 wrote:Most people I see have a sleep debt the size of our national dept. AHI 35or higher Severe OSA. Others are like myself, a little on the chubby side sever snoring or an AHI 5-15 Mild. So its far harder to tolerate. I had a guy one time who feel asleep on our recliner and we had to wake him up. He is the 1% who get use to before they home. 40% of people who get prescribed CPAP actually use them on a regular basis. Everyone can joke and make sarcastic remarks. At the end of the day I'm not promoting my business or relishing in the fact I work for a CPAP company. This is about picking the minds of actual CPAP users so that I can better relate to Joe and Molly who have been scared into CPAP by there doctor. I AM HER TO HELP!!! Sorry i'm not good at these quotes everyone does here or a college grad. If it wasn't for spell check I would be crucified with the rest. I just attend The University of CPAP and happen to be a student of the trade. Hey if it doesn't apply read on right, that's what you guys tough me. I do know what its like to not sleep ask my two daughters 4, 6. I love to help and blessed to be in trade that affords me the opportunity to do so. CPAPTALK. not CPAPUSERTALK. Dang I better get the rights to that.

LOL. CPAP101, I can understand that you might feel a bit under attack. I think it is a completely legitimate use of the information on this forum to use it to help serve your own patients better, and I respect a guy who's got his own hx of sleep deprivation.

Hello All and good evening!

Though I am in awe, and take my hat off to all those who have contributed to this topic, today I'm sure you'll join me in expressing sorrow and empathy for those at the Boston Marathon. That event was truly, truly tragic, and my prayers are with all those who have been effected by it.

Senseless.

Jim

somewhere is all of this needs to be a special chapter & tips for the "over 15 club"

Those of us on with pressures over 15 experience or have both bi-pap pressures over 15 have an entirely new realm of issues to deal with... Controlling leaks & finding a mask that works is a whole new ballgame... what works at a pressure of 10 can be a total failure at 20.

DoriC wrote: I'm sure he is trying to sell his book or get material for a second edition... @ Mollette....Please try a little harder!

I certainly shall, Dori!

Here we have the DME's ultimate revenge. Taking all the suggestions provided by the group that (rightfully) exposes poor practices of the DMEs, bundling them up and selling it back to them.

"Here's a great tip!! Let me sell it back to you!!"

Dave, have you ever written a book? I'd buy that one for sure if I knew what alias you used! I agree, this thread is useless to most of us but we're educating the OP so that's a good thing, right?.

DoriC wrote:Dave, have you ever written a book? I'd buy that one for sure if I knew what alias you used! I agree, this thread is useless to most of us but we're educating the OP so that's a good thing, right?.

+1
But Dave your book must be a satire.

NotLazyJustTired wrote:

chunkyfrog wrote:CPAP101: Todzo makes a good point on just putting a mask on versus the experience of doing it while
stressed and sleep-deprived, to say nothing of high pressure and no exhale relief.
Add to that the misery of having a mask that DOES-NOT-FIT, or is improperly adjusted, and I think you might get the picture.
There are quite a few variables, and many are far from ideal.
My hat is off to those here who've had to endure far more than I.

I'll pile on here. All kinds of crazy things go through your mind when you are sleep deprived. I would not have admitted that several weeks ago, but I see it now that the fog is lifting. I am not an emotional person but I remember that first night getting upset to tears because I couldn't make that damn mask work. I wanted so much to get better; the tendency though is to extrapolate your experience to the point of utter desperation that you will never get better. I am sure many of us went through a similar experience. If you aren't suffering the consequences of poor sleep it would be very hard to relate such things. My $0.02.

And then add to all of that the fact that the procedures used by current sleep medicine are all but doomed to fail.

I posted this in the previous thread but I think it bears a mention at this time:

Job three – titrate!

I do not believe that the current procedures used to titrate xPAP can ever be effective.

Because:

We do not sleep in the lab, or the sleep center, or the doctors office.

Our breathing reflexes take time to develop for any new pressure and/or algorithm you throw at the breathing control systems.

During at least the first three months of effective therapy healing will result. Healing from the effects of obstructive sleep apnea will move the point at which obstructive events are likely to occur (the pressure required to prevent obstructive events) as well as the point at which the xPAP pressure will induce unstable breathing.

The two thresholds mentioned above often move with the seasons, I have found.

They also move with weight gain, or loss, or changes in body conditioning, or illness, or any number of other changes likely to occur in a human life.

They move profoundly due to changes in the level of stress in the life or in the day.

I believe that:

Titration needs to be done exclusively in the home excepting that a “ball park” titration may be done in the lab if the person is there for some reason.

Titration should be considered a long term ongoing process. [example of self titration – ongoing]

Monitoring should be constant. The whole process needs to become automated. The data needs to be available to the person for daily lifestyle management. The person needs to be informed of problems by e-mail, or call, or other alert.

kaiasgram wrote:

DoriC wrote:Dave, have you ever written a book? I'd buy that one for sure if I knew what alias you used! I agree, this thread is useless to most of us but we're educating the OP so that's a good thing, right?.

+1
But Dave your book must be a satire.

With a glossary that defines the many acronyms used, including the ones you made up!

SleepingUgly wrote:

kaiasgram wrote:

DoriC wrote:Dave, have you ever written a book? I'd buy that one for sure if I knew what alias you used! I agree, this thread is useless to most of us but we're educating the OP so that's a good thing, right?.

+1
But Dave your book must be a satire.

With a glossary that defines the many acronyms used, including the ones you made up!

I tell ya, that'd come in handy right about now! Even I forgot half of 'em!

OK, three-quarters of them!

OK, none of them really stand for anything!

Except for TMOAT.

Ah, those were the days!

mollete wrote:Except for TMOAT.

Ah, those were the days!

Amen, brother!