First Night With CPAP the good & bad

I had researched so much on OSA and CPAP use, I thought this would go smoothly....WRONG!! I now fully realize what lousy service I received from the DME. When I actually began assembling the mask & setting up the machine....I was totally overwhelmed. I tried going to bed but was so uncomfortable & restless...my husband couldn't sleep. I ended up just sitting up in a recliner and trying to use the machine in an upright position. I managed to keep the mask on for a couple of hours but was constantly adjusting & re-positioning the pillows.

I tried it with and without the humidifier. The DME had it set for 80 and I couldn't tolerate that. I finally reduced the setting to 65 and it was much better. I'm having a real problem with the "ramp"....I don't like it. When I have the pillows on....I need air blowing or I feel like I am suffocating. Can I turn off the "ramp"?. My machine is set at pressures 5 to 20 so it does begin with a very gentle air flow. I did go back to bed, this morning and managed to sleep for 4.5 hrs but couldn't fall asleep until the air flow began. I couldn't feel any air leaks and think I managed to keep my mouth closed. I felt much more alert when I got up but no increase in energy.

Questions: on the S9 AutoSet, the On/Off control is confusing me. I'm assuming "green" is the therapy mode but sometimes it's "blue" and I don't understand why. I told y'all I had a lousy DME tech, didn't I.

Humidifier: I know I was very tired & frustrated but...is it just my lack of patience or does that sucker take a long time to "warm up"???

Taz

You can turn off Ramp -- look at the video tutorial for the S9 (link below in my signature box). It will show you how to make adjustments.
The S9 does take a little bit of time to warm up. You can start warmup before you go to bed -- video tutorial shows how to do this.

Well done for doing your research before starting xpap! You will find it helps you identify, verbalise and solve problems much quicker, and will help you make the best choices as your therapy continues.

What theoretical knowledge can't do is help you physically "do" xpap. Think of it as a skill, like driving, or a sport...we can read the books and know the theory by heart, but we still have to physically learn to "do" it.

You are still in the very early stages. You are still sleep deprived from (presumably) years of sleep disorder. Be patient with yourself. You have a great support team both on the boards here and in your husband. It's terrible that your DME is unhelpful, but you can still get the therapy you need.

It is the rare xpapper who doesn't get frustrated to point of anger in the early stages (sleep deprivation remember, and trying to trouble shoot something when your body and mind are screaming for sleep) BUT you will get there. Perservere, be patient, and keep reaching out for help and information.

Good Luck, and keep us posted

My machine is set at pressures 5 to 20 so it does begin with a very gentle air flow.

If you had a titration study, what pressure did they find was effective? A pressure setting of 5 - 20 doesn't work well for most people. It might work well for people whose pressure requirements are 5 to 8. If you need 10 or above, a minimum of 5 is too low.

BTW, many people, myself included, feel "starved for air" if the pressure is running below 7.

kaiasgram wrote:You can turn off Ramp -- look at the video tutorial for the S9 (link below in my signature box). It will show you how to make adjustments.
The S9 does take a little bit of time to warm up. You can start warmup before you go to bed -- video tutorial shows how to do this.

kaiasgram,

Thanks for the reminder. I may need to watch that video many more times, too. Every time I watch it I seem to pick up something new. The guy in the video....I'm beginning to feel like I know him personally.

Taz

mobychick wrote:Well done for doing your research before starting xpap! You will find it helps you identify, verbalise and solve problems much quicker, and will help you make the best choices as your therapy continues.

What theoretical knowledge can't do is help you physically "do" xpap. Think of it as a skill, like driving, or a sport...we can read the books and know the theory by heart, but we still have to physically learn to "do" it.

You are still in the very early stages. You are still sleep deprived from (presumably) years of sleep disorder. Be patient with yourself. You have a great support team both on the boards here and in your husband. It's terrible that your DME is unhelpful, but you can still get the therapy you need.

It is the rare xpapper who doesn't get frustrated to point of anger in the early stages (sleep deprivation remember, and trying to trouble shoot something when your body and mind are screaming for sleep) BUT you will get there. Perservere, be patient, and keep reaching out for help and information.

Good Luck, and keep us posted

mobychick,

Thank you for your kind words and wisdom. Yes, I have already had serious moments of frustration and I keep telling my self to just take this "One Day At A Time". My husband is very supportive however he's had a recent sleep study and will most likely be starting CPAP, soon....he's watching very closely.

Taz

Taz wrote:

kaiasgram wrote:You can turn off Ramp -- look at the video tutorial for the S9 (link below in my signature box). It will show you how to make adjustments.
The S9 does take a little bit of time to warm up. You can start warmup before you go to bed -- video tutorial shows how to do this.

kaiasgram,

Thanks for the reminder. I may need to watch that video many more times, too. Every time I watch it I seem to pick up something new. The guy in the video....I'm beginning to feel like I know him personally.

Taz

The ramp is not the problem. Remember her pressure is set 5 - 20. The ramp starts at 4 and takes her up to 5. Although I would turn the ramp off, the problem is the minimum is too low.

This sounds like they are trying to do a titration study.

ChicagoGranny wrote:

My machine is set at pressures 5 to 20 so it does begin with a very gentle air flow.

If you had a titration study, what pressure did they find was effective? A pressure setting of 5 - 20 doesn't work well for most people. It might work well for people whose pressure requirements are 5 to 8. If you need 10 or above, a minimum of 5 is too low.

BTW, many people, myself included, feel "starved for air" if the pressure is running below 7.

Hi ChicagoGranny,

No, I did not have a titration study, by choice. The first sleep study was so uncomfortable and anxiety producing, slept less than 3hrs and refused to repeat it for a titration. My doctor described my case as severe Stage 4 but simple OSA with no centrals. I've never seen or spoken to the "sleep doc", my primary physician wrote the RX. Of course the sleep lab insisted I needed the titration study and I know.... they make a lot more money, that way, too. My doc spoke with the sleep lab and then my insurance company approved the APAP therapy without a titration study. That's exactly what I wanted. The sleep lab recommended the 5 to 20 pressure and my doc just went with that.

The 2nd night on CPAP was awesome!!!! I slept 7.5hrs....never woke even once, zero mask leaks and AHI 4. I was elated, felt much more alert and a little more energetic. I was so excited and managed to get SleepHead downloaded....then no data would post. I read pugsy's posts and discovered my machine was recording "usage" only as set up by the DME. I watched the tutorials for the S9 AutoSet, again and changed the selection to "ON" to record all data.

Third night (last night) was just awful. I couldn't get comfortable...kept adjusting the pillows...couldn't fall asleep. Yes, yes....I do feel kind of "starved for air"....I'm so glad you posted that!! When I first put the pillows on, I feel like I'm gasping for air and it takes several minutes for me to calm down. I don't think I slept much and I was actually in bed for 8hrs but feel like I was awake much of the time. I got up, once and when I connected the mask back, I went through the gasping, again and then could not fall asleep.

I'm being monitored by my insurance for 3 months. Can I change the pressures on my machine? On the 2nd night when I slept soundly for 7.5hrs, the report on the machine slows I reached a pressure of 11.8. Does this tell me anything? I'll try to upload the SleepHead data from, last night but I know I was awake much of the night.
I could ask my doc about changing the pressure but he's not a sleep doc, the sleep lab & DME have not been that helpful and honestly, I feel like I'm going to be "on my own" through much of this.

Thanks,

Taz

Christine L wrote:

Taz wrote:

kaiasgram wrote:You can turn off Ramp -- look at the video tutorial for the S9 (link below in my signature box). It will show you how to make adjustments.
The S9 does take a little bit of time to warm up. You can start warmup before you go to bed -- video tutorial shows how to do this.

kaiasgram,

Thanks for the reminder. I may need to watch that video many more times, too. Every time I watch it I seem to pick up something new. The guy in the video....I'm beginning to feel like I know him personally.

Taz

The ramp is not the problem. Remember her pressure is set 5 - 20. The ramp starts at 4 and takes her up to 5. Although I would turn the ramp off, the problem is the minimum is too low.

This sounds like they are trying to do a titration study.

Hi Christine,

Yes, you are exactly correct...I refused the titration study and it is my understanding, that most likely my insurance would not have approved it, anyway. They see my case as a simple OSA case without complications. My doctor submitted the RX to the insurance company and it was approved the same day. Please someone, suggest some pressure changes. I'll tell my doctor and I'll assure you, he will be elated that this is working for me. I doubt my insurance company is concerned with my pressure settings...I think all they care about is how much I'm using it. I turned the ramp "off" the first night.

Taz

Taz wrote:[ I read pugsy's posts and discovered my machine was recording "usage" only as set up by the DME. I watched the tutorials for the S9 AutoSet, again and changed the selection to "ON" to record all data.

I'm being monitored by my insurance for 3 months. Can I change the pressures on my machine? On the 2nd night when I slept soundly for 7.5hrs, the report on the machine slows I reached a pressure of 11.8. Does this tell me anything? I'll try to upload the SleepHead data from, last night but I know I was awake much of the night.
I could ask my doc about changing the pressure but he's not a sleep doc, the sleep lab & DME have not been that helpful and honestly, I feel like I'm going to be "on my own" through much of this.

Thanks,

Taz

As you found out the only thing that was being tracked was usage. That would really have helped your doctor with the titration LOL NOT! The insurance and DME are only interested in the hours used, they don't give a rats ass about the quality of your treatment.
Once you have data in Sleephead, post it and people will help you adjust it. It is not difficult and remember IT IS ONLY AIR!!! Diabetic kids adjust their insulin all the time and insulin can kill you.

Taz wrote:Please someone, suggest some pressure changes.

Okay. I will. Try starting pressure minimum of 6 cm (maybe 6.5 or 7.0) and leave everything else the same and see if you can breathe easily and smoothly without feeling air starved. While I know we won't suffocate at low pressures it can sure feel like it and it is uncomfortable and when we are uncomfortable we just don't sleep so great and the number one thing we want right now....sleep.

Get yourself situated with SleepyHead software and then let's see if the minimum maybe needs to be more from a therapy standpoint. Often when the minimum pressure is set optimally and able to do a better job preventing airway collapses we find that the machine doesn't always need or want to go as high as initially seen. Works better preventing...rather than trying to fix after the fact.

In addition to Pugsy's excellent suggestion I will suggest that you try to hyperventilate a little just before you put your mask on. By taking a few deep breaths you give yourself a little buffer against the feeling that you aren't getting enough air.

BlackSpinner wrote:

Taz wrote:[ I read pugsy's posts and discovered my machine was recording "usage" only as set up by the DME. I watched the tutorials for the S9 AutoSet, again and changed the selection to "ON" to record all data.

I'm being monitored by my insurance for 3 months. Can I change the pressures on my machine? On the 2nd night when I slept soundly for 7.5hrs, the report on the machine slows I reached a pressure of 11.8. Does this tell me anything? I'll try to upload the SleepHead data from, last night but I know I was awake much of the night.
I could ask my doc about changing the pressure but he's not a sleep doc, the sleep lab & DME have not been that helpful and honestly, I feel like I'm going to be "on my own" through much of this.

Thanks,

Taz

As you found out the only thing that was being tracked was usage. That would really have helped your doctor with the titration LOL NOT! The insurance and DME are only interested in the hours used, they don't give a rats ass about the quality of your treatment.
Once you have data in Sleephead, post it and people will help you adjust it. It is not difficult and remember IT IS ONLY AIR!!! Diabetic kids adjust their insulin all the time and insulin can kill you.

Hi BlackSpinner,

I agree with you...I'm learning very quickly that my CPAP therapy is going to be up to me. I really like my primary doc, he is very supportive and I'm pretty sure he will agree to anything that is working for me.

Thanks,
Taz

Pugsy wrote:

Taz wrote:Please someone, suggest some pressure changes.

Okay. I will. Try starting pressure minimum of 6 cm (maybe 6.5 or 7.0) and leave everything else the same and see if you can breathe easily and smoothly without feeling air starved. While I know we won't suffocate at low pressures it can sure feel like it and it is uncomfortable and when we are uncomfortable we just don't sleep so great and the number one thing we want right now....sleep.

Get yourself situated with SleepyHead software and then let's see if the minimum maybe needs to be more from a therapy standpoint. Often when the minimum pressure is set optimally and able to do a better job preventing airway collapses we find that the machine doesn't always need or want to go as high as initially seen. Works better preventing...rather than trying to fix after the fact.

Hi Pugsy,

Thanks for the suggestion....I'm going to give it a try. I spent all afternoon reading your tips for understanding SleepyHead and I'll post my first report, tomorrow after trying the new pressure setting. Well...first I'll have to figure out how to post it to the forum but I'll get there......

Taz

HoseCrusher wrote:In addition to Pugsy's excellent suggestion I will suggest that you try to hyperventilate a little just before you put your mask on. By taking a few deep breaths you give yourself a little buffer against the feeling that you aren't getting enough air.

HoseCrusher,

That's a good idea...thanks for mentioning it.

Taz