CPAPtalk.com

Are you washing the nasal pillows every day, or using CPAP wipes to clean them? Facial oils can stop the pillows from forming a good seal.

Even after 18 months at this, I still spend a few minutes each night, watching some mindless tv, tweaking my headgear and mask so it's snug but comfortable. It also gets me breathing unconsciously, so after a few minutes I'm good and drowsy and fall asleep very quickly.

If you have problems with the mask during the night - get up for a few minutes, then calmly put the mask back on before falling asleep again, making sure everything feels just right.

We all have good nights and bad nights and sure know how frustrating this can be at first. Hang in there - it does get easier. Read as much as you can, ask questions, try all suggestions, have patience and listen carefully to any advice given. The great folks here have a wealth of experience to share.

Cheers,
xena

What I don't get is if this is "good" for you then when why do I feel like a train hit me every morning... The "feeling" I get from this is not normal and I got a much better night sleep without the mask. Yes I wake a number of times, but I'm no where near this tired the next day.

I'm getting the feeling this is "normal" feeling you get using the mask. Is this the case?

My problem is not the Doctor or Technician told me about this. So I'm trying to figure out what is going on.

LSAT wrote:

brvoltz wrote:After night 3 I'm still tring to find the licence plate number to the truck that has ran me over and over... I have no problems with the mask, the breathing issue are reducing, as in my mind is not so focused on breathing. Last night I had a very big problem with leakage, I took the mask off at 3:00am (bed time was 12:00am) I could get it to stop leaking but then it would start. This was the first time for this issue.

I feel so beat up it is unreal. My chest still hurts, I'm still very jittery, and I feel so VERY tired. 10x more then when I was not using the mask.

If you are waiting for someone to tell you to give up...it's not going to happen. You say that you have 'no problem with the mask'...but...a big problem with leakage. If you have a 'large' leak problem, you are not getting the pressure needed for your therapy.

No not looking for that, just trying to find out why I feel so crappy when others use CPAP with positive results. It is becoming clear that I'm not the only one that has negative results from using CPAP.

xenablue wrote:Are you washing the nasal pillows every day, or using CPAP wipes to clean them? Facial oils can stop the pillows from forming a good seal.

Even after 18 months at this, I still spend a few minutes each night, watching some mindless tv, tweaking my headgear and mask so it's snug but comfortable. It also gets me breathing unconsciously, so after a few minutes I'm good and drowsy and fall asleep very quickly.

If you have problems with the mask during the night - get up for a few minutes, then calmly put the mask back on before falling asleep again, making sure everything feels just right.

We all have good nights and bad nights and sure know how frustrating this can be at first. Hang in there - it does get easier. Read as much as you can, ask questions, try all suggestions, have patience and listen carefully to any advice given. The great folks here have a wealth of experience to share.

Cheers,
xena

Nope, this is the first I have heard of doing this. I will give this try....

If this keeps up I will be out of job, could not go into today because I fell a sleep walking down the steps at home...

How about we look at a couple nights detailed reports to see if anything stands out that might look like that bus that ran you over?
Check out my signature line for SleepyHead software information. It will work with your machine.

You have probably seen images of reports in people's posts here. We normally use screen shots so that others can see what we are seeing. If you will post a couple of nights daily detailed reports someone will look at them and see if anything stands out that is less than optimal.

If you don't know how to post screen shots here...this is how I do it.


Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.

Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

Watch your overall sleep hygiene. If you're not feeling like sleep, don't put on the CPAP, and don't be in the bed.

I, myself, am a believer in sleep debt. And you might be feeling weird because your body is not used to having sleep that doesn't involve strangulation.

It can take some time, but patience is worth it.

Have you contacted your DME (the place where you got the machine)? They can help you to figure out what is not working right for you.

I've only been using mine for 2 weeks. I have had a few bad nights, mostly okay nights, and a few really good nights. The best I have done was 5 hours straight without waking up, and that was totally awesome. I felt so good the next day. But except for the 3 bad nights, I have felt better each day than I did before I started using it. So, it sounds like the machine is either not set correctly for you, or you are not getting any sleep at all. You definitely shouldn't be feeling worse.

With the machine on, do you feel like you are getting any sleep at all? Or do you wake up several times an hour? If you are waking up constantly because of being uncomfortable, then you need to have the DME help you adjust it to make it more comfortable for you. You won't be able to get the therapy if you can't actually sleep with it.

If you are actually sleeping for awhile at a time, and it isn't helping, then it may actually be the settings. It might be too low of a pressure or too high, or something else that is making it not work correctly for you.

The DME is supposed to help you adjust it and make it work for you. They may need to try a different machine, or a different mask, or whatever to make it work for you. Everybody is different, so it takes some trial and error to get it right.

I know it is frustrating and difficult. I know I have found myself swearing at it when I can't get the mask adjusted to avoid leakage, and all I want is to be unconscious.

brvoltz wrote:What I don't get is if this is "good" for you then when why do I feel like a train hit me every morning... The "feeling" I get from this is not normal and I got a much better night sleep without the mask. Yes I wake a number of times, but I'm no where near this tired the next day.

I'm getting the feeling this is "normal" feeling you get using the mask. Is this the case?

My problem is not the Doctor or Technician told me about this. So I'm trying to figure out what is going on.

I slept better in the sleep lab my first night so I can't offer any advice there.

Leaks are highly disturbing. So can where the air flows and the different sounds.

Also a setting of 4->6 isn't much. I don't breath right at 4. If yours is at 4 as low pressure, you could be low on air all night.

You may need a different mask or setting. Talk to your DME.

brvoltz wrote:After night 3 I'm still tring to find the licence plate number to the truck that has ran me over and over... I have no problems with the mask, the breathing issue are reducing, as in my mind is not so focused on breathing.

If you find that license plate, let me know. That same truck kept running me over night after night back in Fall 2010 when I was a newbie.

Seriously, though: There are a few of us who do seem to have hypersensitive brains and bodies. And the newness of everything related to the CPAP can cause some real serious sleep disturbances. It takes time, time, and more time for some of our brains to sort out that the PAP is a friend and ally instead of an insidious torture device sent by the devil to destroy our lives one night at a time.

I had an exceptionally hard adjustment period. For three solid months I felt as though I were running a marathon every night. Or being hit by that truck that's running you over right night. Or a goose being fattened up for fois gras by being force-fed more air than my lungs could comfortably take in. My daytime functioning took a nose dive and like you, I have never felt as bad as I did during the first three months on PAP therapy. For the first time in my life I was afraid of falling asleep at the wheel and I became very dependent on my husband to drive me to/from work each day.

Things slowly started to get better after a change of machine (from CPAP to APAP to BiPAP) and after I started doing some seriously hard work on reigning in the CPAP-induced insomnia monster that moved into my bedroom during those first three weeks. It took time. And more time. And even more time. But eventually things started to turn around. Adding to my misery was the fact that my migraines had decided to become chronic and had started to manifest themselves as vertigo. And reigning in the migraines also took substantial effort on my part. Three trials of prophylactic meds lead to various serious side affects, all of which added to my misery. But slowly, as the migraines came under control and the insomnia began to lessen, I started to feel better in the daytime. And about 8 months after I started therapy, the phrase "I woke up rested and somewhat refreshed" started appearing in my sleep journals. And the hand and foot pain I'd been dealing with for five or six years began to disappear. And my brain and body slowly came to accept the sensory stuff from the machine as a reasonable trade-off for not having to repeatedly arouse to restart the breathing.

So it does get better.

Some suggestions that may or may not be reasonable for trying to make your adjustment take less time than mine:

1) If it is possible to take some time off of work (vacation time in need be), then do that. That will allow you to focus your attention on training your body and mind that the hose is your friend while not worrying quite so much about the daytime problems with functioning for the time being.

2) Call the sleep doc's office SOONER rather than LATER to report the extreme daytime exhaustion and sleepiness. While it is not unheard of, it is an unusual reaction to CPAP. Document just how lousy you feel as well as how much you are using the machine at night and how you would rate the quality of your sleep.

3) Tighten up on sleep hygiene. Even though you are exhausted and unable to function, it's important to try to maintain a regular sleep schedule. Try to avoid taking naps---even micro naps. Try to get to bed at the same time each night. And try to force yourself to get up in the morning at your normal waking time. If you can sleep soundly all night while going to bed a bit earlier, that's fine. But if going to bed earlier just leads to a long restless period sometime in the night, you'd be better off waiting until your normal bedtime to go to bed.

4) Try to get some physical activity every day so that your body is tired by bedtime. Try to get some time outside in the sunlight if possible. Morning sunlight is particularly useful in helping you maintain some semblance of a normal sleep schedule.

5) Take care of any other medical conditions that you have going on as well. All kinds of things adversely affect our sleep. And once the OSA arousals/desats are being prevented by the PAP, all those other things start raising their ugly heads and tearing up your sleep.

Best of luck,
Robysue

Again thanks to all for the time and insight you have provided, I'm taking all this in and trying all the suggestions. Because I was so Tired I did not put the mask on last night and I feel GREAT today. So we will go at it again tonight. My normal sleep day is from 2am to 10am ( as in this seems to be my body's normal time to sleep.) not my normal day. I have been to the Doctors office a number of times, they are completely confused and feel I may be one of the people that CPAP does not work on, but we are trying a few more things before they call it quits....

My normal night per the sleep study is I wait 6 times an hour, on the machine, it feels like and I'm aware of around 30 times an hour of waking up. When I'm not on the machine, I feel like I wait 2-5 times a night over 8 hours. The setting of 4 then ramp to 6 in 10mins to go to sleep feel good, no issues. I know the auto on the machine kicks in around 7 on the machine. I know that my mind was really having a hard time with the machine the first couple of nights. If I wait until I'm tired it will be 2am.... But I have to be up at 5:30am to goto the office.... So this gets a little ugly.... So I have to try to go to bed around 10pm....

I'm working on getting readings from the data card now....

Apnea will kill you, if you're lucky. If not, it will slowly wear you down, and perhaps give you a stroke, heart damage, brain damage or other ailments.

Treatments other than CPAP have such poor success rates, they should be considered quackery. Including surgery and weight loss.

Most people eventually adapt to CPAP if they stick it out and figure out how to adapt to it. Keep trying. If you fall off the wagon, get back on it the next day.

Think of it like stopping drinking. Untreated apnea, oxygen deprivation, etc. is something your body and brain have adjusted to, just like excessive drinking. When you stop having apnea, your body sometimes takes a while to get adjusted to the different situations.

brvoltz wrote:My normal sleep day is from 2am to 10am ( as in this seems to be my body's normal time to sleep.) not my normal day.
...
If I wait until I'm tired it will be 2am.... But I have to be up at 5:30am to goto the office.... So this gets a little ugly.... So I have to try to go to bed around 10pm....

You've got a circadian rhythm problem going on here: Your work schedule demands that you sleep at a time your body does not feel sleepy.

And with all the sensory overload from the CPAP, you're going to find it extremely difficult to fall asleep four hours before you typically get sleepy. And so going to bed at 10pm when you are not sleepy is a recipe for disaster.

You need to talk to the sleep doc about the disconnect between your body's normal circadian rhythm (sleep from 2AM to 10AM) and your work mandated sleep schedule (sleep from 10PM to 5:30AM) since your work schedule is 4 hours off what your body wants. That's a problem that's not going to fix itself. It will require some work.

But the central piece of that work needed to reset the circadian rhythm will still be "go to bed when you are sleepy" And "no naps during the day regardless of how tired you are"


And it is still WAY, WAY too early to conclude that you are "one of those people for whom CPAP just doesn't work." Before concluding this, you need to be sleeping with machine for several weeks to several months and ON a sleep schedule that makes sense to both your body and your work. In other words, work on fixing the circadian rhythm problem at the same time you're trying to adjust to CPAP. Once your body is getting sleepy enough for you to quickly fall asleep around 10pm every single night, then you'll be in a better position to judge whether CPAP is going to eventually be a net positive.

Check the EPR setting on your machine. DME's like to set it 3, the max, which drops the pressure 3 cmh20 when it decides you are exhaling. At 6 cmh2o I doubt that you need it. Many of us can't use it and you might try dropping it to 1 or off. There is a video tutorial for your machine at cpaplibrary.com. Check my signature for the link.
There is also a ResScan tutorial for that software that is available here.
How did you feel after your titration? Do you know how close they got to titrating you?

Let's see if this works...

Here are the results:
https://plus.google.com/photos/11186697 ... nYL08ffKYw

Lizistired wrote:Check the EPR setting on your machine. DME's like to set it 3, the max, which drops the pressure 3 cmh20 when it decides you are exhaling. At 6 cmh2o I doubt that you need it. Many of us can't use it and you might try dropping it to 1 or off. There is a video tutorial for your machine at cpaplibrary.com. Check my signature for the link.
There is also a ResScan tutorial for that software that is available here.
How did you feel after your titration? Do you know how close they got to titrating you?

Sorry I did not understand the terms you used here... I'm a newbie...