Sick and tired of being sick and tired

Guest wrote:"Sick and tired..." a familiar phrase. Are you a friend of Bill W? sandman19

Sorry, no affiliation.

Starlette wrote:Good evening Nedi.

Welcome to the forum *offers cup of hot chocolate with a slash of hooch*. Sit back, relax, and read, read, read when you have a minute or two.
There is LOTS to learn about sleep apnea and how to control it. Lots of great peeps to help you through the process.

Starlette

Thanks for the encouragement. I'm in it for the long haul!

Also, Pugsy, i noticed in the data exported to SleepyHead that although my peaks were between 9 and 10, my mean pressures were around 7. Going to set range 7-10 tonight and see. leads me to another question though: What is common in terms of testing periods? I'm sure that it is somewhat different for each individual but are there patterns for success? Shall i try new settings for 3 days? A week?
thanks

nedi wrote:

archangle wrote:Does it say "AutoSet" next to the power button on your machine, or "Escape Auto?"

The equipment listing will show this as "S9 AutoSet...."

You may need a chinstrap to keep your mouth closed. If all else fails, use a full face mask that covers both the mouth and nose.

Yes, It reads "escape auto".
.

You have been ripped off. You have minimal information to help you deal with these issues.

Does your report show AHI data? I don't think the Escape shows any leak data so the AHI would not really be reliable if you're having large leaks. Any chance of getting it switched to an S9Autoset?

Allow at least 4 for 5 days with any change you make. We will vary from night to night anyway and you need to see if the change holds or was just a fluke.
Last night I had AHI 4.6 (way high for me because I normally run right around AHI 1.0 or less.)
We don't sleep the same every night.

The ResMed S9 Auto Escape gathers minimal data. It will show you your average pressures and you overall AHI but no breakdown. It doesn't show leaks at all. No way to tell if leaks are bothering you. AHI breakdown into which type of event is very important. We need to know if you are having central apneas especially.

The ResMed S9 Autoset is the one you want. It offers a huge amount of data.
I would be calling the DME and telling them that this machine doesn't do what you want..you want full data.
Here is just one section of a report from when I used a ResMed machine in Dec.

This data is priceless. It enables us to see exactly what needs improvement on to help you have the best chance of feel better.
So you need to tell the DME that this isn't the FULL data that you expected. This only does pressure and overall AHI..no breakdown as to centrals, obtructives or hyponeas, snores, flow graph. Event duration..whole bunch of stuff is available.

Nedi, I won't suggest what to do, (that might be giving med advice), but I'll tell you what I did (and ran by my doc for later approval).

I set my lower pressure range to my titrated pressure, then using the nightly data as corrective feedback sloooowwwly modified it, just a little upward, to get to an AHI of less than 1.0. The vets here at the time (most long since moved on) recommended a tight apap range, so I set my upper range at 3.5 cm above my lower pressure. I have read that having an apap set from 5-20 is a "prescription for failure" because every time you use it, you will need to be in frank apnea for the software to adjust up to an effective pressure. No thanks! The real value of an apap is having the lower pressure set to a cpap pressure, and having the capability to adjust modestly upward when necessary (leaks, sleeping in a weird position, having a cold, etc).

For me, it worked like a charm, my AHI averages less than 0.4, and life's good. I always prepare an annual report for my pulmonologist, who in my case was fine with me adjusting my pressures, and who is genuinely impressed with the result. (Your physician's response may vary)

If you chose to modify your pressures, keep your doc in the loop, and use your data to prepare a report for a comprehensive explanation.


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Hi nedi!

Pugsy wrote:The ResMed S9 Autoset is the one you want.

Yes, and we can help you twist the arm of anyone in your way.



Without data we are all blind men.

Get the S9 Autoset, by any means necessary.

.
__________________________________________________________
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nedi wrote:I may be missing something being new to all this

You are missing nothing.

You are simply new, like everyone else once was.

And communicating by internet bulletin board is far from ideal.

.
_________________________________________________________

I lost my peace of mind
Somewhere along the way
I knew there's come a time
You'd hear me say:

I'm sick and tired
Of always being sick and tired

Anastacia - Sick and Tired

DoriC wrote:Does your report show AHI data? I don't think the Escape shows any leak data so the AHI would not really be reliable if you're having large leaks. Any chance of getting it switched to an S9Autoset?

Hi. Unfortunately I'm stuck with what I have. I live in the Caribbean and only make it back to the States once every 4 months or so. I can post data from overview though...

Pugsy wrote:Allow at least 4 for 5 days with any change you make. We will vary from night to night anyway and you need to see if the change holds or was just a fluke.
Last night I had AHI 4.6 (way high for me because I normally run right around AHI 1.0 or less.)
We don't sleep the same every night.

The ResMed S9 Auto Escape gathers minimal data. It will show you your average pressures and you overall AHI but no breakdown. It doesn't show leaks at all. No way to tell if leaks are bothering you. AHI breakdown into which type of event is very important. We need to know if you are having central apneas especially.

The ResMed S9 Autoset is the one you want. It offers a huge amount of data.
I would be calling the DME and telling them that this machine doesn't do what you want..you want full data.
Here is just one section of a report from when I used a ResMed machine in Dec.

This data is priceless. It enables us to see exactly what needs improvement on to help you have the best chance of feel better.
So you need to tell the DME that this isn't the FULL data that you expected. This only does pressure and overall AHI..no breakdown as to centrals, obtructives or hyponeas, snores, flow graph. Event duration..whole bunch of stuff is available.

I'm afraid nothing can be done until April. I do know that I have central apneas. I tried turning off the EPR and setting the pressure to 7 seeing as my 95% is always near 7. Didn't sleep well, but didnt feel that bad this morning either. Shall I post a pic of the overview? Should I post daily numbers ? You are all so helpful, I don't want to just keep griping and mot utilizing the help.

Captain_Midnight wrote:Nedi, I won't suggest what to do, (that might be giving med advice), but I'll tell you what I did (and ran by my doc for later approval).

I set my lower pressure range to my titrated pressure, then using the nightly data as corrective feedback sloooowwwly modified it, just a little upward, to get to an AHI of less than 1.0. The vets here at the time (most long since moved on) recommended a tight apap range, so I set my upper range at 3.5 cm above my lower pressure. I have read that having an apap set from 5-20 is a "prescription for failure" because every time you use it, you will need to be in frank apnea for the software to adjust up to an effective pressure. No thanks! The real value of an apap is having the lower pressure set to a cpap pressure, and having the capability to adjust modestly upward when necessary (leaks, sleeping in a weird position, having a cold, etc).

For me, it worked like a charm, my AHI averages less than 0.4, and life's good. I always prepare an annual report for my pulmonologist, who in my case was fine with me adjusting my pressures, and who is genuinely impressed with the result. (Your physician's response may vary)

If you chose to modify your pressures, keep your doc in the loop, and use your data to prepare a report for a comprehensive explanation.


.

Thanks. So you have seen good results from a tighter auto range. Do you have any experience with adjusting the range around the median listed in the nightly data?

Just Uploaded data to Sleepyhead last night. I set EPR off and set range from 7 to 8. the data shows a mean and a 95% @8.6. I woke up several times last night and noticed my mouth was all gummy and dry (yuck). It appears I may have to shave the old soup-strainer and try full face. Any new input with that data? Also, i notice AHI data only for two isolated days (?). Are there any typical settings I should be aware of in Sleepy Head like Import or CPAP tabs under preferences?

A good rule of thumb that many use as a base line setting is 2-/2+, so if your 95% is 8.6 you might try 7- 11cms and watch the trend for a few nights. I'm glad you're thinking of getting rid of the old "soup strainer", it might be for a worthy cause. Besides having a data-capable machine, the right mask with minimal leaking is key to successful therapy. Someone more knowledgeable will be along to help you with SleepyHead and your machine. I also use ResScan but really like SH and all the info it provides although it was being a little finicky the last few days but happy that last night's data was OK again and matched ResScan. You're in the right place here and I hope you'll soon be able to change the title of your thread.

Only thing in preference you might want to do is set it to eliminate short sessions which mess with the reporting continuity. I have mine set to eliminate sessions less than 10 minutes. This eliminates short trials with a new mask or whatever. Otherwise the defaults are pretty decent. I did go in and make changes to fonts to make it prettier at least for me. With your limited data from the Auto Escape there really isn't much available to change.

nedi wrote:I set EPR off and set range from 7 to 8. the data shows a mean and a 95% @8.6

This doesn't compute..range 7 min and 8 max??? you should have a 95% number of 8.6 because it shouldn't go above 8. Is it possible that the report is including other dates with a higher pressure?

You say you have a history of some centrals? In sleep study or titration study or both? How many centrals? A few or a large number? They should have given you a machine that scored centrals for separate inspection.
In your case it would really be nice to see how much of your AHI is composed of Central Index.
Perhaps when you return to the states you might be able to get a full data machine so that you can have more details than you have now.

Pugsy wrote:Only thing in preference you might want to do is set it to eliminate short sessions which mess with the reporting continuity. I have mine set to eliminate sessions less than 10 minutes. This eliminates short trials with a new mask or whatever. Otherwise the defaults are pretty decent. I did go in and make changes to fonts to make it prettier at least for me. With your limited data from the Auto Escape there really isn't much available to change.

nedi wrote:I set EPR off and set range from 7 to 8. the data shows a mean and a 95% @8.6

This doesn't compute..range 7 min and 8 max??? you should have a 95% number of 8.6 because it shouldn't go above 8. Is it possible that the report is including other dates with a higher pressure?

You say you have a history of some centrals? In sleep study or titration study or both? How many centrals? A few or a large number? They should have given you a machine that scored centrals for separate inspection.
In your case it would really be nice to see how much of your AHI is composed of Central Index.
Perhaps when you return to the states you might be able to get a full data machine so that you can have more details than you have now.

Yes, the 8.6 confused me. It appears to be just for the one night, though, as the other nights' 95% are lower. My centrals were noted in sleep study...well maybe I'm assuming. I don't believe the study was very thorough because I only slept about 4 hours total and they showed that all I needed was a setting 5 on the APAP (I wish). I'm personally aware of the central apneas because as I'm in between sleep and wakefulness I notice that I simply stop breathing. Also, my girlfriend has reported this as well. Last night I trimmed my beard way down and started with the face mask hoping to eliminate my mouth exhalations. I think its working, but now have to get used to the mask (what do you do when your nose itches?!? )
I changed the settings from pillows to mask in the APAP. I noticed this morning that the 95% was at my max setting of 8.6. I'm going to try mask/ 7-10 tonight and look at the new reports. If I don't max out or see any glaring reason to switch the settings, I'll try it for a few nights. I also emailed the APAP provider stating my disappointment in them for not making me aware of my options as a consumer and requested an exchange. Hopefully they'll comply.