What am I doing right?

As someone who is VERY new to all this but hasn't gotten a solid night of even 6hrs of sleep in the past 4 months, I am hanging on to yours and the other "success" stories" here. I'm finding it very helpful for alleviating my internal stress over getting a machine. So while I admit, I've got nothing constructive to add, I do thank you for your post!

erad

jennmary wrote: ↑

Tue Mar 27, 2018 11:40 pm

But really......I was just LUCKY. No one is doing anything wrong, you are not somehow doing something right. This post seems pretty condescending and I dont think that comparing people who struggle to conterfeit money is at all productive or helpful and I fail to see how anyone who struggles would not be offended by that nonsense.

Me too. I was lucky that my sleep tech fitted me with the perfect mask the first time. I was lucky that I rolled over and slept 5+ hours straight for the first time in my memory. I was lucky that my sleep doctor has sleep apnea himself and always prescribes a full data auto machine. I was also prescribed the right pressure settings from the beginning, so no need to play with them. (I do raise the mininum from 11-13 when I have a bad cough).

That said, I got home with my machine and the same mask style that was used at the sleep study. And I struggled getting that thing to stay on without leaking. I fought with it. I swore at it. But I knew it was the right mask since that style worked for me at the sleep study. I learned about the smaller headgear, got it, and that was a major improvement.

I still have struggles here and there. Once, on a trip, I sat awake for hours because I just could not get the mask to fit right. I was sharing a room with my sister and didn't want my snoring to wake her. Night before was fine. Next night was fine. Must have had gremlins that night.

So, while I have had a variety of smaller struggles, I know that I was lucky that my sleep tech, sleep study, and sleep doctor did a good enough job to start me off well. Oh, and since my sleep study went so well, I got a taste of a really good night. While it took me time at home to repeat that, I knew what it felt like and what I was missing. It's a lot easier to keep trying when you know what success feels like. I know a lot of people here did NOT get a good night's sleep during the sleep study, so they did not get a taste of how good it can feel. And they are often sent home with a poor machine and/or lousy settings. They have been set up to fail.

I started cpap in 2002. I had no problems adjusting to it! When i began checking data (my first machine gave me only compliance), I had to do some tweaking - with a lot of help from people on this forum at that time. Since I got help here, getting a good setting (after getting an auto), data is now great. My AHI is very, very rarely over 1. That's been the same for most of those years.

Eradicator wrote: ↑

Wed Mar 28, 2018 11:50 am

As someone who is VERY new to all this but hasn't gotten a solid night of even 6hrs of sleep in the past 4 months, I am hanging on to yours and the other "success" stories" here. I'm finding it very helpful for alleviating my internal stress over getting a machine. So while I admit, I've got nothing constructive to add, I do thank you for your post!

erad

I assume that you've been using CPAP (or at least attempting to) for the last four months, but have serious issues. The first inclination is to look for what you're doing wrong. What I'm suggesting is to look at what successful users are doing right first. Then maybe see what you're doing (or not doing) different.

Bertha deBlues wrote: ↑

Tue Mar 27, 2018 12:49 pm

D.H. wrote: ↑

Tue Mar 27, 2018 11:58 am

I really had minimal to no problems adjusting to CPAP. I will soon hit the nineteenth anniversary of usage.

When I heard of all these problems, I couldn't help but ask "what are they doing wrong?" However, it occurred to me that maybe I should ask what I did right?

The counterfeit money detectives don't spend their time studying counterfeit money. Rather, they spend their time studying genuine currency! Maybe studying what's being done right is the key to compliance.

Wow, 19 years with no problems? Every time I think I have it right because I have a good night or two, I get knocked down a peg by having a less than optimal night. I've learned to be happy with good results, typically under 2 AHI. The important thing is that I feel rested and my energy level is back where it used to be years ago.

You mean you did something right ? How did you do that ? are you like super nany ? super woman ? super men ? Spider women ??? Just curious. Do you have any tips on how you did it ? would love to do things right... Just not my way of doing things...

esel wrote: ↑

Thu Mar 29, 2018 1:03 pm

You mean you did something right ? How did you do that ? are you like super nany ? super woman ? super men ? Spider women ??? Just curious. Do you have any tips on how you did it ? would love to do things right... Just not my way of doing things...

Whoa, I never said I have it right, or that I'm super anything, just that I've found what works for me. I have gotten to a place where it is not perfect, but I'm happy with where I am. For me, it took perseverance, lots of reading about the experiences of other users on this and other forums, looking at my Sleepyhead reports, and a willingness to tweak the settings.

Bertha deBlues wrote: ↑

Thu Mar 29, 2018 1:09 pm

esel wrote: ↑

Thu Mar 29, 2018 1:03 pm

You mean you did something right ? How did you do that ? are you like super nany ? super woman ? super men ? Spider women ??? Just curious. Do you have any tips on how you did it ? would love to do things right... Just not my way of doing things...

Whoa, I never said I have it right, or that I'm super anything, just that I've found what works for me. I have gotten to a place where it is not perfect, but I'm happy with where I am. For me, it took perseverance, lots of reading about the experiences of other users on this and other forums, looking at my Sleepyhead reports, and a willingness to tweak the settings.

OUPS ??? Wait a second ?!? I did not mean you did something right ! Would never dear to say something like that. I intended to say that D.H. did something right !!! Sorry my mistake.

esel wrote: ↑

Thu Mar 29, 2018 1:54 pm

Bertha deBlues wrote: ↑

Thu Mar 29, 2018 1:09 pm

esel wrote: ↑

Thu Mar 29, 2018 1:03 pm

You mean you did something right ? How did you do that ? are you like super nany ? super woman ? super men ? Spider women ??? Just curious. Do you have any tips on how you did it ? would love to do things right... Just not my way of doing things...

Whoa, I never said I have it right, or that I'm super anything, just that I've found what works for me. I have gotten to a place where it is not perfect, but I'm happy with where I am. For me, it took perseverance, lots of reading about the experiences of other users on this and other forums, looking at my Sleepyhead reports, and a willingness to tweak the settings.

OUPS ??? Wait a second ?!? I did not mean you did something right ! Would never dear to say something like that. I intended to say that D.H. did something right !!! Sorry my mistake.

No problem. Thanks.

I guess, I must be from an other planet. At least with respect of doing things right.

Maybe here a few points for those out there to who I have stupidly stepped on their tails.

My background is ADD (Bipolar has never been excluded)

Invisible men, the one with nice glaces, he sees everything, I never saw him nor his eyes, quoted the following article.

https://www.mhfmjournal.com/open-access ... orders.pdf

I tried to understand... well, I do not understand very much in it. There is simply every possible outcome. For example they have 2 patient both bipolar, both have sleep apnea, one has a manic phase after CPAP treatment, the other one has not ! Statistically you have 50% of bipolar for which CPAP maybe not appropriate. BUT as in any research, one could dismiss an outlayer so, all of a sudden "most" bipolar's treated with CPAP will develop a manic phase if their medical treatment has not been adjusted. Wauuu ... nice data... and now what ?

The way I see it, and please bear in mind I am still learning, making lots of stupid assumptions not even talking about mistakes. I try now to adjust the number of nights I use CPAP while not too much changing Effexor (75 - 150 mg an anti depressor) and keep Lamictal at 100 mg a stabiliser constant. Knowing that I only need minimal amount of positive pressure to cut down events.

Finally, I hope, I may not need too many nights on CPAP, balance it with my medicine and enjoy the nice rest of my bad aerophagia.

OK, Easter is around the corner, have fun here, I will go hunt chocolate Easter eggs.

I am not suggesting superiority in any way. I'm just suggesting that I - quite inadvertently - got it right the first week (in 1999). I was one of the first people diagnosed who wasn't considered critically or terminally ill.

I'll suggest a few possibilities:

1) My initial titration was ideal, so that the pressure met my needs exactly.
2) The Sleep lab tech noticed that I was sleeping on my back most of the time. Rather than ask me to move, he simply adjusted the pressure to allow for that.
2) The mask fit my face just right, so minimal or no leaking.
3) I used humidification from the very first night, so I did not have "dryness" issues.
4) I realized that the ramp was annoying me, so I disabled it early in the therapy.
5) The severity of my case (AHI 52) made for very immediate and noticeable relief.
6) There is just something about my exact condition that made CPAP treatment ideal (in other words, it might be possible to predict up front who will not benefit from CPAP and direct such persons to other therapies).

Note that when they brought this machine to my house, I decided I would not use it during travel. By the third morning, I know that wasn't going to be the case, even though the thing was quite bulky (150% the size of my Dream-station including the humidifier).

D.H. wrote: ↑

Wed Apr 11, 2018 8:33 am

I'm just suggesting that I - quite inadvertently - got it right the first week (in 1999).

You know that old saying...even a blind hog/squirrel finds an acorn every now and then.
It's not rocket science and sometimes even WAGs get it right the first time.
You got lucky...plain and simple.

D.H. wrote: ↑

Thu Mar 29, 2018 12:40 pm

The first inclination is to look for what you're doing wrong.

D.H. wrote: ↑

Wed Apr 11, 2018 8:33 am

I am not suggesting superiority in any way.

No, that is exactly what you are suggesting.

The whole premise of this topic is; because CPAP has gone well for you it is because of things that you have done correctly. And for those experiencing difficulty, it is because they have been doing things wrong.

There doesn't appear to be and consideration on your part to recognize than many who do not have the same success, could be because of reasons beyond their control.

Dog Slobber wrote: ↑

Wed Apr 11, 2018 9:53 am

D.H. wrote: ↑

Thu Mar 29, 2018 12:40 pm

The first inclination is to look for what you're doing wrong.

D.H. wrote: ↑

Wed Apr 11, 2018 8:33 am

I am not suggesting superiority in any way.

No, that is exactly what you are suggesting.

The whole premise of this topic is; because CPAP has gone well for you it is because of things that you have done correctly. And for those experiencing difficulty, it is because they have been doing things wrong.

There doesn't appear to be and consideration on your part to recognize than many who do not have the same success, could be because of reasons beyond their control.

I realize that it may have been taken this way, but that's not what I'm trying to convey. I think that I just stumbled blindly into success and am trying to backtrack and figure out why. Especially, I think that there are some for whom CPAP is not an option. If we can identify that population early, they can be steered into other options up front. Admittedly, in 1999 the only alternatives to CPAP were tracheostomy and/or tonsillectomy, so that might have been strong incentive.

I probably had apnea at least that long, but it was not diagnosed until 2010.
I recall having excessive daytime sleepiness from the 1970's on.
VERY excessive. Forty years plus, feeling like dog plop.
Luck can be getting a diagnosis before you turn 60!
Luck is being a male with a fat neck--and common sense.
Luck is having a face that fits a lot of masks; because, Lord knows,
work is a 4-letter word--especially at the DME!
Luck is having INSURANCE, or sources for affordable supplies.
(Cpap.com--unsolicited plug)
Luck is finding Cpaptalk, because it can save your life-- if you just work at it.
D.H., give luck its fair share of the credit.

chunkyfrog wrote: ↑

Wed Apr 11, 2018 11:41 am

I probably had apnea at least that long, but it was not diagnosed until 2010.
I recall having excessive daytime sleepiness from the 1970's on.
VERY excessive. Forty years plus, feeling like dog plop.
Luck can be getting a diagnosis before you turn 60!
Luck is being a male with a fat neck--and common sense.
Luck is having a face that fits a lot of masks; because, Lord knows,
work is a 4-letter word--especially at the DME!
Luck is having INSURANCE, or sources for affordable supplies.
(Cpap.com--unsolicited plug)
Luck is finding Cpaptalk, because it can save your life-- if you just work at it.
D.H., give luck its fair share of the credit.

Yes, I do think that it was mostly dumb luck and most of the things on the list. It was really the last minute too; any longer and I would have been unable to work and thus would have lost my health insurance. The earliest post I was able to find was 2004, so I assume that this website did not exist in 1999.

What also helped was that the concept of not being able to fall asleep was alien to me. The thought that I would not be able to sleep due to wires, electrodes, or a CPAP mask did not cross my mind.

They used to say that one who cannot fall asleep in a sleep lab is one who didn't need a sleep test in the first place. We now know that this is absolute nonsense!