Another Newbie With More Stupid Questions

I was sent to a sleep study a couple of weeks ago because my wife mentioned to my doctor I snore a lot (thanks Dear). Here are some of the results:
Total time in bed 418.0 minutes. Total sleep time 364.5 minutes. Sleep efficiency 87.2%.

Sleep Architecture: 71.0 minutes REM (19.5%), 28.0 Stage 1 (7.7%), 256.5 Stage 2 (70.4%), 9.0 Stage 3 (2.5%). Arousal index 17.0/hr.

Respiratory: Total of 70 respiratory events. AHI 11.5/hr during total sleep time. REM AHI 36.3. 4 obstructed apneas, 0 mixed or central, 66 hypopneas. 15 RERA's. RDI 14.0. Mild to moderate snoring (my wife will argue about this one).

Oxygenation: Average 93%. Minimun 82%.

Average heart rate 51.0 bpm. No evidence of periodic leg movements.

Went back last Thursday night for titration and as of 5am the next morning, I was the owner of a CPAP machine, complete with matching humidifier, hose and FFM. Yesterday I saw the doctor that ordered the sleep study and his physician's assistance said I probably didn't "need" CPAP, but my quality of life would be better with it (THIS my wife would agree with!). He said with or without it I'd probably live just as long (I'm 48). I left feeling a little confused, but was OK to stay on it.

Lets go back a few day. When I received the unit, I asked the level it was set. As usual, the tech wouldn't say. So being the curious type, I did some reading and found out how to get into the clinician's menu and check the settings. Pressure is set to 10 (with ramp starting at 6). No big deal. No problems using it, etc. This afternoon I get a call from the sleep study people who gave me the machine saying I need to come in because the doctor ordered a change in the pressure to 9. I didn't mention I knew what it was already set to. Now for the questions? Is there really going to be much difference between 10 and 9? Also, since many on this forum have more experience than many of the doctors (including mine), looking over the data, do I even need CPAP or are they now covering their bases?

Thanks for your help.

The DME... is covering their bases... and will probably charge your insurance (or you if you don't have coverage for them) something just to make the change.

Make the change yourself if YOU decide that you need it.

rstcso

Firstly welcome to cpaptalk - an interesting & fun place

Changing pressure by 1 CMs is not really dramatic but can make a difference for some people. The main goal of the
therapy is to set the pressure as low as is possible (without going too low) such that any apneas and associated 'events'
get cleared and that you as the user can handle the pressure & deal with the mask.

what is significant though is that 10 CMs pressure is sort of a hallmark in cpap therapy. 10 CMs is the pressure at which
most normal people should have an open airway and not suffer any no-flow apneas. Some brands treat 10 CMs specially.
The Resmed machines are more cautious (the AUTO machines) when they reach 10 CMs during Auto ranging.

Good luck

DSM

I'm fortunate that my insurance is covering almost 100% of everything. From what I've been able to understand from reading everything on the internet I could find so far, the goal with using CPAP is to lower the AHI. In the past few nights I've had the unit, my AHI has been 3.9, 2.9, 1.3 with 0 AIs. Last night my AHI was 7.1 with AI 0.6. Correct me if I'm wrong, but if this is the case, wouldn't lowering the pressure cause the AHI to most likely go higher?

Thanks for having this forum. Being a new guy on the hose, it's helpful having these resources at your fingertips, literally.

Respiratory: Total of 70 respiratory events. AHI 11.5/hr during total sleep time. REM AHI 36.3. 4 ,obstructed apneas 0 mixed or central, 66 hypopneas. 15 RERA's. RDI 14.0. Mild to moderate snoring (my wife will argue about this one).

Oxygenation: Average 93%. Minimun 82%.

Average heart rate 51.0 bpm. No evidence of periodic leg movements.

Your AHI during REM is severe. You don't mention how long you spent at that minimum oxygenation - but that minimum is bad. Below 90% in a hospital, and you get supplementary oxygen. Once your oxygen drops, your brain struggles to keep you awake.
You are getting hardly any deep sleep (stage 3 and stage 4) which is necessary for your physical health - all in all, I'd say the PA is playing doctor -- and not doing it very wisely.

Let them change the pressure, see how you feel with that for a week - and if you want it back on 10 move back to 10 after trying out the doc's recommendation.
O.

rstcso wrote:Is there really going to be much difference between 10 and 9?

Nope. If it were me, I'd leave it at 10. Especially if you have EPR (for some pressure drop during exhaling) turned on in your machine.

rstcso wrote:his physician's assistance said I probably didn't "need" CPAP

What an absolutely stupid, irresponsible thing for the PA to say, given what showed up in your diagnostic sleep study!! ozij's post sums it up well.

rstcso wrote: but my quality of life would be better with it

No kidding.

rstcso wrote:He said with or without it I'd probably live just as long (I'm 48).

A very ill advised, irresponsible statement by the PA again.

You know... there are soooo many people who are very resistant to using cpap in the first place. Can you imagine what someone who doesn't understand the damage that can result from untreated sleep apnea would take away from a meeting with such a nonchalant-about-it PA? A PA who obviously doesn't understand AT ALL the seriousness of what your sleep study showed.

Most newly diagnosed who heard, "you probably don't need CPAP...." and "with or without it you'll probably live just as long".... from a medical professional (of all people!) would become a cpap dropout in short order. I mean, why even try to use it if the doctor's PA is that casual and unconcerned? Geeze.

Good thing you have more sense than the PA demonstrated, rstcso. Good thing you found your way to this message board. And good thing your wife wants you to use "cpap" -- for whatever the reason.

Thanks for the reply, rested gal. The EPR is turned off. As a matter of fact, most of the bells and whistles are turned off. When I see the guy who will be making the pressure change later today, I'll ask about these settings and see if I'll get a straight answer. If I don't, I'll just wait until I get home and do it myself (thanks to the forum for info on accessing the clinician's menu).

I will have a talk with the cardiologist about the PA. They are both young, so maybe the PA doesn't understand, but I'm sure his boss does. I agree that's no excuse, but I'm willing to give him a pass as long as the cardiologist is willing to take him out to the woodshed and "explain the seriousness" of the situation.

Last night as I was putting the mask on, my wife said "You like that thing, don't you"? I can honestly say I don't like it, but I used to scuba dive a lot (divemaster) and have not had any problems getting used to it. Also, I am not getting up in the middle of the night with my nose stopped up and dry mouth. If I wake up in the middle of the night, she has her hand on my side or stomach. When I asked her about it, she said that was just how she was sleeping, but since I'm not snoring, I think this is how she knows I'm still alive . More than anything, because of the information I have been able to find on this forum and other internet sites, I understand how serious the situation is/could be and don't have any resistance to helping myself. Thank you again. Take care.

I'm a couple of weeks ahead of you in the process. One thing I am trying to learn is that my AHI will vary a little from day to day.

rstcso wrote:In the past few nights I've had the unit, my AHI has been 3.9, 2.9, 1.3 with 0 AIs. Last night my AHI was 7.1 with AI 0.6. Correct me if I'm wrong, but if this is the case, wouldn't lowering the pressure cause the AHI to most likely go higher?

The answer to your question is a definite "maybe".

I moved my c-flex(like EPR) from 2 to 1 and things got better, so I decided to try turning it off, and things got worse.

Things move around some and understanding why is confusing.

Hang in there and keep at it. You obviously are benefitting from this and at some point, I have a strong feeling that you'll "wake up" suddenly and realize how much that benefit is.

Many thanks to all! I went to the sleep people today to get the pressure changed and met Don, my "DME Coordinator" (I didn't know I had one!). I started out by telling him about being blindsided with this whole sleep study/CPAP-next-to-my-bed stuff and how I was trying to learn all I could about everything. I also asked if I could get the data from the sleep studies, not just the summaries. He was amazing. He pulled up both reports, explained them to me and printed them out so I can look over them again and again. He also pulled up the sleep technician's report showing all the times, pressures and other goodies during my titration. He showed me why the doctor changed the pressure to 9 from 10. At 9 I wasn't having any apneas/hypopneas as well as my snoring was gone (my wife will like this part). Don wasn't quite sure why the tech didn't set it to 9 to begin with.

I also told Don I'd downloaded the data from my unit onto the card and would he mind taking a look at it with me. He brought it up and went over it with me, explaining all the things that were most important and what I could mostly ignore due to the nature and sensitivity of the unit.

After this I started the bombardment of questions specifically pertaining to the care and use of the unit. He said if I'm using distilled water, clean the tank and hose every two weeks. If any other water, every two days. Their recommendation is to use Dove or Ivory hand soap, fill a sink with warm water, gets some suds going (I think this might be the time to drink a beer ) and let everything soak for 30 minutes, including the disassembled mask, then rinse.

For daily cleaning of the mask, he recommends a product called Citrus II - CPAP Mask Cleaner. He said to wipe all the oils off, then wipe inside the mask.

Don gave me his card as well as his boss's, in case he wasn't available and I needed something quickly. I am going to use the boss's card's info to send an email letting the boss know how impressed I am with Don, his attitude and willingness to take the time answering all my questions and giving me a much better understanding as to what's going on... and why!

As for the PA, I have a call into the cardiologist .

rstcso wrote:Many thanks to all! I went to the sleep people today to get the pressure changed and met Don, my "DME Coordinator" (I didn't know I had one!). I started out by telling him about being blindsided with this whole sleep study/CPAP-next-to-my-bed stuff and how I was trying to learn all I could about everything. I also asked if I could get the data from the sleep studies, not just the summaries. He was amazing. He pulled up both reports, explained them to me and printed them out so I can look over them again and again. He also pulled up the sleep technician's report showing all the times, pressures and other goodies during my titration. He showed me why the doctor changed the pressure to 9 from 10. At 9 I wasn't having any apneas/hypopneas as well as my snoring was gone (my wife will like this part). Don wasn't quite sure why the tech didn't set it to 9 to begin with.

I also told Don I'd downloaded the data from my unit onto the card and would he mind taking a look at it with me. He brought it up and went over it with me, explaining all the things that were most important and what I could mostly ignore due to the nature and sensitivity of the unit.

After this I started the bombardment of questions specifically pertaining to the care and use of the unit. He said if I'm using distilled water, clean the tank and hose every two weeks. If any other water, every two days. Their recommendation is to use Dove or Ivory hand soap, fill a sink with warm water, gets some suds going (I think this might be the time to drink a beer ) and let everything soak for 30 minutes, including the disassembled mask, then rinse.

For daily cleaning of the mask, he recommends a product called Citrus II - CPAP Mask Cleaner. He said to wipe all the oils off, then wipe inside the mask.

Don gave me his card as well as his boss's, in case he wasn't available and I needed something quickly. I am going to use the boss's card's info to send an email letting the boss know how impressed I am with Don, his attitude and willingness to take the time answering all my questions and giving me a much better understanding as to what's going on... and why!

As for the PA, I have a call into the cardiologist .

Re: Text I have made bold. Care to share what you were told?

The main point he wanted to make on this specific unit is to not worry about showing some HIs. He said this machine will usually log an event if you are rolling over from back to side or vice versa. It's the nature of it and don't make too much out of the numbers as long as they are consistent and remain fairly low. If it logs an AI, that's more important, yet still nothing to be alarmed about. He showed me the data from my titration study and how once the pressure was taken to 9, I stopped having ALL apneas/hypopneas as well as snoring. I've only shown a very small amount of AIs in the past six nights on my CPAP, but even this might be a function of the machines sensitivity and not necessarily an actual event. Of course, he might be lying .

rstcso wrote:The main point he wanted to make on this specific unit is to not worry about showing some HIs. He said this machine will usually log an event if you are rolling over from back to side or vice versa. It's the nature of it and don't make too much out of the numbers as long as they are consistent and remain fairly low. If it logs an AI, that's more important, yet still nothing to be alarmed about. He showed me the data from my titration study and how once the pressure was taken to 9, I stopped having ALL apneas/hypopneas as well as snoring. I've only shown a very small amount of AIs in the past six nights on my CPAP, but even this might be a function of the machines sensitivity and not necessarily an actual event. Of course, he might be lying .

Thanx. Rested Gal once suggested to divide the HI number from a Resmed machine by 2. My HI #s are in the 1s and 2s doing that.

rested gal wrote:

rstcso wrote:He said with or without it I'd probably live just as long (I'm 48).

A very ill advised, irresponsible statement by the PA again.

You know... there are soooo many people who are very resistant to using cpap in the first place. Can you imagine what someone who doesn't understand the damage that can result from untreated sleep apnea would take away from a meeting with such a nonchalant-about-it PA? A PA who obviously doesn't understand AT ALL the seriousness of what your sleep study showed.

Most newly diagnosed who heard, "you probably don't need CPAP...." and "with or without it you'll probably live just as long".... from a medical professional (of all people!) would become a cpap dropout in short order. I mean, why even try to use it if the doctor's PA is that casual and unconcerned? Geeze.

Amen. With those results and that attitude on the part of the Doc/PA, you might want to change physicians if possible. Certainly, continue to visit here and ask questions and read the responses you yours and others queries.

With the pressure set to 9, I didn't sleep as good and my wife said I was snoring. Little baby snores, but still snoring. Since I had not snored once since I got the unit, I set it back to 10. We'll see how tonight goes.

rstcso wrote:Don, my "DME Coordinator"

From what you wrote about what he said, you've lucked onto a "good'un."

With the help of Don, and this message board, and your wife's wonderful support, and your obvious intelligence, you're going to tweak your therapy fine!