Very New User feeling so overwhelmed....

[Pugsy]

Welcome to the forum.

How long are you going to be using this loaner? I also think the ramp starting at 4 is probably making the anxious feelings worse. Simply not enough air movement to feel comfortable. Rather stifling and without the feeling of movement it can feel much warmer than it really is..especially if apprehensive.

Ramp is strictly a comfort feature. You can use it or not and even change the ramp starting pressure.
There is no reason in the world why you can't adjust the ramp settings if you wish.

Send me a PM and tell me your private email address and I will send you the clinician manual in pdf format so you can easily see how adjustments are made. I am not suggesting making willy nilly changes to the therapy pressure. I am only suggesting for now that the ramp be adjusted so that you are more comfortable to make adjustment phase easier to deal with.

I once hooked my sister up to my machine to sort of screen her for OSA. I started it at 4 cm. It took her all of 30 seconds to start screaming she was suffocating (which of course she wasn't) but once I set it at 6 cm she relaxed and did quite well. Heck even at my titration sleep study they started out at 5. That was even then a bit stifling for me.

[archangle]

As to `loaner`, this machine is being loaned to me to see how I get on with the use of it, so as for changing the settings up from 4 I have no knowledge as such the technician from the home care company set them as per Drs request. I have been told that it needs to be higher than 13 as during my sleep study I was still snoring and had apnea but did not stay asleep long enough for machine to register high enough.

The machine will display the pressure it's at while it's running. Look on the display. Unfortunately, it's a lousy display and you'll need a flashlight or a light on in the room. Even with a flashlight, you may have to play around with what angle you hold the light at to read the crummy display.

Look at the pressure when you turn it on, when you wake up, and especially when you feel it's suffocating you. If you have a panic attack and take the mask off, look at the reading before you turn the machine off.

After you've used it a few days, you can read some data off of the machine. Turn the knob until "info" is highlighted. Press the knob. Turn it to highlight the various bits of info and press enter to see what the readings are. AHI and 90% pressure are the most interesting items. You can't hurt your machine.

If you want to change your pressure settings, that's secret information reserved to the use of the medical professionals. Of course, it's well known on the internet how to change the settings. You probably don't want to tinker with your settings yet, but we can tell you where to find the info if you decide to.

[robysue]

barbara8912,

First: Welcome to the forum.

Second: You write

To me I feel a complete failure, anxiety level is off the scale and whilst I know am putting myself under awful pressure I cant seem to stop thinking about it.

Please remember that you are NOT a failure. You most certainly didn't deserve to develop OSA---none of us do. And you are NOT a failure at doing CPAP therapy unless and until you give up completely, turn the loaner back machine back in without arranging for a permanent machine, and decide to live with untreated OSA. (And even then, we'll welcome you back when the OSA stuff gets bad enough where you decide to make another go at CPAP.)

As long as you keep trying, we on the forum will do our best to get you from frightened newbie to successful CPAPer.

Third, much of what you write indicates that you really are having some serious anxiety issues with the mask and the machine. Some things to keep in mind: There's nothing at all natural about sleeping with a six foot hose attached to your face every night. And there's a lot to learn about how to manage to do this trick every single night. And we all have our own pet issues to deal with before our conscious mind, our unconscious mind, and our body first come to grips with the fact that we really need to sleep with the machine ALL NIGHT, EVERY NIGHT and then move beyond acknowledging the need for the machine to genuine acceptance of the machine in our lives. Some of us make that adjustment quicker than others. And we all sincerely hope that your adjustment will be a short one; but if it's not be assured that no matter how long it seems as though your adjustment period is dragging on---you are NOT alone.

As for concrete things to try to make it less tough right now:

The first thing is to remember that the GOAL is to help your mind and body make a deep and profound association that Time to Sleep = Time to Mask Up. Ultimately you want putting on the mask to become a habit---just like brushing your teeth. And I do know how ridiculous and impossible that seems right now. But that really is the whole goal of working on adjusting to xPAP---to get to where Time to Sleep = Time to Mask Up.

Now first you need to deal with the anxiety issues. You've gotten lots of quality suggestions---particularly the ones about how to desensitize yourself to the feeling of the mask on your face by using it in the daytime when you are NOT trying to get to sleep. But in addition to the simple anxiety and claustrophobia triggered by masking up, there's another more insidious source of anxiety at the beginning of xPAP therapy for many of us: The fear or anxiety that's triggered by our NOT knowing or our NOT understanding what this machine that's moved into our bedroom is actually doing each night. The anxiety of realizing that we're using a machine that we have no real knowledge of while we're asleep is very real. The feeling that we play a completely passive role in this whole OSA/CPAP mess---i.e. the sense that CPAP is being done TO us---can be overwhelming too.

But there are some things that help: Educating yourself about your particular machine and your particular settings will go a long way in helping you begin to realize that APAP is NOT something that's being done to you because of the OSA, but rather it's something that YOU control (ultimately) and that YOU are choosing to do (even though it's not particularly comfortable right NOW) because YOU want to---primarily because YOU want to stay as healthy as you can for as long as you can. Knowledge and attitude are powerful allies in your quest to make APAP work FOR you instead of simply being done TO you.

So---start by reading the user's manual that should have been given you to you. And ask here for a link to the clinical guide to your machine as well. It's not that you want to start playing around with the clinical settings; it's that you want to know that machine inside out and upside down. Because the more you know about the machine, the less there is to wonder about and to be afraid of.

You need to know exactly how the machine is set to run: Is it in APAP mode or CPAP mode? What is the pressure set to? If in APAP mode, what's the MIN pressure and what is the MAX pressure? Is A-Flex turned on? If so, at what setting? What is the ramp time set to? What is the beginning ramp pressure set to? Did the DME lock you out of seeing the data that's provided on the LCD? If so, you should demand they unlock the data (or do it yourself if you're brave enough once you have the clinical manual).

You need to know all these things to help you realize that YOU are still in charge of your life---the machine's not running your life for you, but you are using the machine in a knowledgeable fashion to regain control over that 1/3 of your life that OSA is trying to rob from you.

To start with: When you are using the machine in the daytime to desensitize yourself to it, take a look at the LCD when the machine is on. It should tell you what the starting pressure setting is. If you're using the ramp, watch how often and how fact the pressure goes up and when it stops. Hit the ramp button to see exactly what the ramp button does to the pressure number AND to feel the difference it makes to your nose and face. If the ramp starts at 4cm and you can tell you feel like you're suffocating, go into the patient settings menu and change it to something higher. Play with the Flex setting while you're wide awake and the machine is at its full therapeutic pressure. Some people love Flex set at its max setting of 3; others cannot stand Flex to be on at all. If you can't comfortably breath OUT against the pressure and Flex is not at 3, try increasing the Flex. If you feel the machine is rushing your inhalations, try decreasing the Flex setting or turning it off altogether. The funny thing about an uncomfortable Flex setting is that people will say they "can't breath" or "are suffocating" with both possibilities. It's up to YOU to take charge and do the experiments with the patient comfort settings to find the ones YOU like.

Write down your all your settings. And if you change something, make a note of what the new setting is.

And if you find that you can't change the starting ramp pressure or the A-Flex/C-Flex setting, that means the DME locked you out. So you've got a choice to make: Call the DME and tell them you absolutely NEED them to turn on patient access to the comfort settings---which include the starting ramp pressure and the level of A-Flex/C-Flex. Or read the clinical menu and do it for yourself.

And learn to check your data as often as YOU want to check it. In the early going, good AHI numbers can provide powerful motivation to keep on doing the work that you need to do to make APAP work FOR you. And if you hit a rough patch, those AHI and leak numbers can be used to provide much insight into what might need to be addressed in terms of your therapy. Since the current machine is only a loaner, you should check out Onkor or SleepyHead for looking at all the detailed data your machine is recording each night since they are free alternatives to Encore Viewer. Your DME and your doctor will NOT be able to tell from the SD card that you've looked at the data in one of these pieces of software.

And it's not too early to start educating yourself about what you need to know about your DME in order to make sure that when you return that full efficacy data loaner machine that you currently have, the DME doesn't replace it with a brick that only records compliance data.

And what to do when you wake up in the middle of the night without the mask on? Calmly put the mask back on and turn the machine back on and try to go back to sleep.

And when you simply cannot get back to sleep without consciously taking the mask off? Get out of bed, go into a different room to do something quiet and relaxing that will take your mind off mask for a while. Return to bed only when you are mentally ready to mask up again. Because every time you choose to consciously fall asleep without the mask on, you are undermining making that deep and profound connection that Time to Sleep = Time to Mask Up.

Best of luck

[barbara8912]

Thank you all and Robysue, it is clear that I need to read up and become a little less afraid of the cpap machine. Last night, was successful in the fact that I have realised a lot of it is a `state of mind` re my anxiety and I have to say I have after wearing them during the day become quite comfortable with the nasal pillows and so going to bed last night was at least anxiety free, When I turn the machine on it comes on at 13 which I find overwhelming to start so press the ramp which starts at 4 last night I held my mask slightly off my face til it reached 6 which was much more manageable, have turned the humidifier off which has helped a lot with the heat and my handy cold flannel for any hot moments has helped. I went to bed feeling confident and calm was aware of the mask and the machine but did feel I fell asleep maybe a wee bittie longer than usual but did fall asleep and then awoke, gritting my teeth, missing a breath, trying to breathe faster but stay calm, then my ears popped and just took the mask off, NO panic, though. Took a good few deep breaths, no tears and recognised at least I had managed an hour. Today I am going to sit with the machine at 13 and hopefully increase my ability to manage inhaling and exhaling at this level without anxiety. I guess this is like eating an elephant one spoonful at a time....

thanks again for all the good tips and support.

warm wishes and thoughts
Barbara

[ameriken]

it is clear that I need to read up and become a little less afraid of the cpap machine. Last night, was successful in the fact that I have realised a lot of it is a `state of mind` re my anxiety

Bingo!

I was skimming through your thread and wanted to type something, and when I got to this post, you already got it figured out. 90% of the battle with xPAP is in the mind.

When I did my first tritration, I woke up with a claustrophobic, suffocating feeling, being locked inside of a mask with that pressured almost freaked me out. I wondered how the heck I would ever be able to sleep through something like this. Then I thought about it a little and talked myself into knowing I could do it because people do it all the time and it's not going to kill me. After that, I had no problems since then and took to my machine like a fish in water.

I think once we deal with the mind issues, we are freed up to deal with all the other issues that occur, like leaks, adjusting pressures, etc. You're on the right track, good luck.

[archangle]

Good job, Barbara.

Try to wean yourself as soon as possible off of just taking the mask off and going back to sleep. That's one of the biggest causes of failure to CPAP. People will find they're taking the mask off without realizing it and wake up in the morning with no mask on.

I'm going to suggest that, if you wake up and can't take more CPAP, then get out of bed, go sit down somewhere else for a few minutes until you're ready to put the mask back on, or at least until you're fully awake. If you simply can't take any more CPAP right away, OK, but wait until you've gotten out of bed and sat somewhere else for a few minutes and are really awake. You don't want to get into the habit of automatically taking your mask off without realizing it and wake up every morning with your mask on the floor.

There's another trick you should develop. There's sort of a valve in your nose. Once you learn how, you can close off your nose with the CPAP on, and open your mouth and breathe, talk, eat, etc. without having air blow through even with the mask on. When you feel yourself not getting enough air, this is useful to simply close off your nose and inhale and exhale heavily through your mouth for a minute or two without taking the mask off.

It's a little difficult to describe, but you should be able to develop this nose trick pretty quickly so you can talk or sip some water without taking the mask off.

Another trick is, if you must disconnect, take the hose off the mask and turn off the CPAP, but leave the mask on. This can be useful if you need a bathroom break, too. It reduces the temptation to just go to sleep without masking up again.

[mayondair]

Barbara, I'm glad you had a better night. As others have said, you may want to change the ramp start from 4 to 6, no reason you can't do this yourself. Are you using AFLex? It can make breathing against the pressure a lot more comfortable, again something you can do yourself. A lot of CPAPing is getting comfy and accustomed to sleeping with mask and machine. You may want to wear the mask while watching TV or reading a bit more, As Robysue says, bedtime , mask , sleep, . Good luck. Kathy

[robysue]

Thank you all and Robysue, it is clear that I need to read up and become a little less afraid of the cpap machine.

Education really is the best antidote for fear of the machine.

When I turn the machine on it comes on at 13 which I find overwhelming to start so press the ramp which starts at 4 last night I held my mask slightly off my face til it reached 6 which was much more manageable, have turned the humidifier off which has helped a lot with the heat and my handy cold flannel for any hot moments has helped.

Today's assignment:

• Task 1: Before you put the mask on today, take a good long time to stare at the LCD when the machine is off. You should notice that it is split into four little rectangles arranged like so:

  Code: Select all

  
  ------------------------
  |  Therapy |  C-Flex   |
  |----------|-----------|
  |  Info    |  Settings |
  ------------------------
  

  Note that the box I've labeled as C-Flex may say A-flex on it or something else entirely if the DME turned Flex OFF when they set up your machine. Next move that round knob to select the Settings box and push the button once to enter the PATIENT's Settings menu. Turn the round knob to see what (if any) settings the DME has allowed you, the patient/user, to set for yourself. The two most important settings PATIENTS/USERS should have access to through this menu are the starting ramp pressure and the A-Flex or C-Flex setting. If you see the starting ramp pressure setting, change it from 4 to 6 since you indicate that 6 was much more manageable for you. If you see the A-Flex or C-Flex setting, make a note of what it's currently set at. If you don't have access to the starting ramp setting or the A-Flex/C-Flex setting, call the DME tomorrow and tell them you need to be given access to the PATIENT comfort settings.
  
  Next move use the round knob over to the Info box and click to select the Patient's Information menu. Scroll down and make a note of what data you see. If you do NOT see any AHI data, the DME set the machine up to lock you out of your own data. In that case call the DME tomorrow and tell them you need access to the efficacy data that's available on the screen. Or consider learning about the clinical menu and making the change yourself.
• Task 2. When you put the mask on your face while you are awake, make some notes about whether the current flex setting is providing enough exhalation relief so you don't feel like you're trying too hard to exhale AND whether the current flex setting is making you feel rushed to start your inhales before you are ready to.
• Task 3. After turning the machine off---but BEFORE taking the mask, turn the knob to the box labeled C-Flex or A-Flex. If your DME has set up the machine in a user friendly way, there should be a real time test of different Flex settings available through this box. When this box is selected, push the big round knob and the machine should start (at your full pressure). And the current Flex setting will be shown. You can use the knob to adjust the Flex up or down and you should immediately be able to feel what the different Flex settings actually feel like to you. You can keep playing with the Flex as long as you like through this box. Once you figure out which setting you like best, keep breathing with the machine for a minute or two and it will then automatically adjust your Flex setting to the chosen level of Flex.

I went to bed feeling confident and calm was aware of the mask and the machine but did feel I fell asleep maybe a wee bittie longer than usual but did fall asleep and then awoke, gritting my teeth, missing a breath, trying to breathe faster but stay calm, then my ears popped and just took the mask off, NO panic, though. Took a good few deep breaths, no tears and recognised at least I had managed an hour.

And tonight what you need to aim for is this: Once you've taken a few of those "good, deep breaths (sans mask) and have no tears, then CONSCIOUSLY make the decision to put the mask back on your face and turn the machine on again BEFORE you go back to sleep. If you've increased the starting ramp pressure up to 6 during the day, you can hit the ramp button and you should be good to go back to sleep. If you absolutely can't stand the thought of putting the mask back on, then calmly get out of bed, go into a different room for a few minutes to continue settling yourself down. Return to the bedroom only when you are ready to put the mask back on before trying to get back to sleep. Remember: Every time you allow yourself to CONSCIOUSLY CHOOSE to go back to sleep without the mask, you are undermining the goal of getting your mind, body, and soul to make the deep and profound connection that Time to Sleep = Time to Mask Up. So do NOT allow yourself to consciously fall asleep without the mask on.

I guess this is like eating an elephant one spoonful at a time....

Yep, it's a bit like that. It's important that the recipe you're using to cook that elephant is a tasty enough one that you can keep coming back for spoonful after spoonful after spoonful after spoonful ....

[chunkyfrog]

It's been a struggle, but. . . .
Waking up without that wretched headache,
and feeling clear-headed all day long--every day--
makes it all worth it for me.

[Mr Bill]

Barbara, welcome
You are getting good advice. I just wanted to chime in with a "me too". I slept with the light on for at least a week and I had that anxiety that made it near impossible to tolerate masking up. Getting up and walking into the next room is good advice. I tried reading out in the living room masked up, just to convince my body that its OK. You can breath just fine with what the machine puts out when resting or sleeping. But that adrenaline gets you going and you want to suck in more air than it can provide and that makes ya panic. So you need to calm down that adrenaline and then try again. Because I have asthma, this still happens to me occasionally and I've been on therapy for 6 months.

I know I am calm enough when I can lay back and mask up without the hose attached and breath OK for a minute or two. Then I turn on my machine, Then I attach the hose to my mask. Then its lights out and sleep. This will work for you and its worth it.

I bought a pulse oximeter and slept with it. Downloading the data the next morning I could always tell when I had taken my mask off because my SPO2 dropped like a rock once I was "sleeping" without the mask. Doing that over and over convinced me that sleeping without the mask does not even count as sleep. It took me 3 months to get past ~4.5 hrs/night. At 8 months, I'm up to >6.5 hrs/night now and increasing.

Best Wishes
Bill

[Julie]

And I'll also suggest setting the ramp to come on at a slightly higher rate (rather than holding the mask off your face) of 6 or 7, that make it easier to breathe than 4.

[barbara8912]

Update... Last night...

Went to bed at 10pm, no ramp, did my night time routine, but added mask on, bed, sleep...

Was apprehensive at first and a little uncomfortable, finding that sleeping on my back seemed best but as a side sleeper somewhat different, any hoo.... relaxed, slept woke at 5am for a bathroom break, removed mask... must just unconnect hose next time, came back to bed mask on, fiddled for a while to stop leaks, felt never going to sleep, woke at 8.45!! Good result...

Only thing, feel very muggy headed, thick headed, and have the most uncomfortable pain in my left leg from thigh to groin??? weight bearing is awful, eases as I walk it out but must have slept with leg in awkward position... would love to say i feel great but a little foggy right now but on the right track for sure.

thanks people....

warm wishes and thoughts
barbara

[sleepnationtv]

Take a look at http://www.cpaplibrary.com it is a new video resource to learn more about your equipment.

Good Luck,

Dane

[cowlypso]

The ramp start pressure on the PR S1 machines is user-adjustable. If you want to use the ramp but start at a higher pressure, just push the ramp button, then turn the dial to raise the starting pressure. The ramp time on this machine is only adjustable from the clinician's manual. (This is opposite of the Resmed machines, where the user can change the ramp time but not the starting pressure.)

If you were uncomfortable with the pressure of 13 last night when you first put it on, then you might start the ramp out at 8 or 10, just to give yourself a few minutes to get settled.

[archangle]

Update... Last night...

Went to bed at 10pm, no ramp, did my night time routine, but added mask on, bed, sleep...

Was apprehensive at first and a little uncomfortable, finding that sleeping on my back seemed best but as a side sleeper somewhat different, any hoo.... relaxed, slept woke at 5am for a bathroom break, removed mask... must just unconnect hose next time, came back to bed mask on, fiddled for a while to stop leaks, felt never going to sleep, woke at 8.45!! Good result...

Only thing, feel very muggy headed, thick headed, and have the most uncomfortable pain in my left leg from thigh to groin??? weight bearing is awful, eases as I walk it out but must have slept with leg in awkward position... would love to say i feel great but a little foggy right now but on the right track for sure.

thanks people....

warm wishes and thoughts
barbara

All right!!!

Don't be too surprised about anything that happens in terms of brain fog, etc. for a while yet. You've been sick for a long time with the apnea. Now that you've killed off the cause of your illness, it may take a while for your body, brain, and mind to readjust. This may be the first time in years you've really slept through the night. Sometimes when you get a really good long sleep, you're groggy for a while, but you needed it.

Be sure to keep up the use of CPAP while sleeping.

You may need to play around with sleeping positions, etc. because of the leg.