Hello to all. First of all, I am so glad that there is a forum for us to visit, discuss, compare notes, and obtain advice.
When I first got out of the Air Force, I had no idea what I would do. My wife and I were married just ten days before I left for basic training. My experience was in electronics and basically HVAC and Civil Engineering. After a couple of jobs that paid the bills, but didn't work out, I was able to secure a position as a Biomedical Technician for a dialysis center. I did this for about 2 years and another 6 months after moving to Austin, TX from Northeast Texas. By that time, we had a 6 month old son and the cost of living was incredible. My wife and I were working 12 hour days and we really did not know the person that was watching our young son. We decided to try to return back to Northeast Texas. I lucked out and was hired as an equipment technician for a Home Medical Company based out of Little Rock. It was a regional DME that was really like a large family. I had no idea what a CPAP machine was. I underwent training at one of our larger stores in Tyler, TX. I learned how to set patients up on home oxygen therapy (oxygen concentrators, liquid O2 systems, etc, setup hospital beds, CPAP, etc). I was the only technician as we were a smaller store. At the time, we did not even have an RT at our location. I had NO idea that I would one day need to use a CPAP. Eventually, after 6 years, I was hired by the largest hospital system in East Texas to manage their HME program. After about 3 years, they decided to stop this program along with home infusion. I finally was hired in Tyler by a new DME national company that had just purchased a Mom and Pop DME. Within the following year, I would gain two more stores. So I had been exposed to all of the new technology for CPAP and BiPAP.
Fast forward to 2011. I had injured my knee just before Desert Storm and was taken off the team that was being inserted for air support, forward air base. When I was discharged, I received a service connected disability due to my injury. For 17 years, I had no problem, however, my knee went totally out in November 2010. Feb 2011, I was about to have surgery and began feeling totally exhausted. My PCP did a work up and found that I had almost NO testosterone in my body. They repeated the test and again it was the same. After my knee surgery, I began taking injections. Fast forward to a year later. My wife and began to notice that my snoring, which I had always snored, had gotten a lot worse, now I would stop breathing for a long time, until she would bump me. I felt totally exhausted so I thought that the Testosterone was no longer working. Originally, I felt like a new person, or rather a teenager again. The results came back and my levels were normal (low normal), however, now my Vitamin D was extremely low. So another prescription. A month of so later, I was not feeling much better so I asked for a sleep study.
I was not sure how I would do in a strange bed, without my wife, with all of the wires and such hooked up to me. I was in bed by 9 p.m. (I usually stay awake until midnight) so I watched TV. Finally around 12:30 or 1:00 a.m. I guess I went to sleep. I woke around 4:30 or maybe 5:00 a.m. I didn't think they got enough data. My appointment with my Pulmonary doc was about two weeks later. He stated I had moderate to severe, however, I know that they did not get as much data as they could have if I truly slept 6 or more hours. Anyway, he ordered a second study and wanted me placed on CPAP and the technician would titrate for the level. I went into the study a little apprehensive. (When I was 5, I had been through a lot. I had severe strep throat from the time I was 18 months old, and they finally decided to take my tonsils out. Back then, they did not explain things to children. I remember then taking me to the OR and transfering me to the table. The next thing I knew, all of these people in masks came at me with this huge, black, rubber mask that had something coming out of it that burned my throat. I kicked and fought, and it took several nurses and doctors to hold me down to knock me out. Even during initial training in the military, when I had to wear full chemical weapons gear-gas mask, etc, I had a slight issue, so I knew trying to sleep with a mask on might be a problem). They ended up going with nasal pillows which I tolerated okay. The problem was, I laid there for 5 hours without going to sleep. My mind just kept racing. They did not get any data. Meanwhile, I continued to feel worse and worse every morning when I woke up. Finally, I reached the Pulmonary docs nurse and asked her if there was not something they could try in my home. They finally ordered an auto CPAP.
I have been setup for two weeks today. The first night, I was using the Resmed Swift LT nasal pillow system. This worked okay for about two nights, then the third night, I was stopped up and could not breath without opening my mouth. Also, I would wear this for about 3-4 hours and then wake up feeling like I could not breath. I decided that I had better try a full face mask. I went in and got fitted. I tried getting used to it during the evening before sleep and would wear it watching TV. I finally was able to deal with the mask and went to sleep. Again, 3-4 hours later, I would wake up and the machine would be blowing extremely hard. It was not a leak. I realized I could see what was happening with my machine.
Here is what, after two weeks the averages are:
Pressure average= 18.0 (max was 19.5) My range set is 5-20
I truly believe that when I approach REM sleep is when I stop breathing. Then my pressure adjusts up and I have a hard time trying to exhale against it and I wake up feeling like I cannot breath or catch my breath. Apparently, my pressure is too high for the nasal pillows because I will eventually open my mouth during the night to try and exhale. I am supposed to take my card in today for the RT to download and read. I am wondering if I might need a BiPap that might help more with what is happening. Any thoughts? (I am sorry for such a long post, but wanted to let you know my history. One more thing, I have NEVER had ANY respiratory issues until about 12 years ago. I suddenly developed walking pneumonia. Since then, I have had it almost every spring. In the military, I worked around a lot of asbestos, and as a biomed tech, I worked with formaldehyde that we used to sterilize the dialyzers (kidneys that each patient used up to 25 times).
I appreciate any suggestions or help!
5-20 seems like too large of a spread. Talk with your doc about narrowing the gap to something like 10-20 or 12-20 and see if that helps. Sometimes if it's set to low you feel starved for air and take off mask or nose pillows.
Hi fenderplayer69, First of all, WELCOME! to the forum! and thank you for sharing your story. Hang in there for more suggestions.
(09-14-2012, 01:24 PM)fenderplayer69 Wrote: Here is what, after two weeks the averages are:
Pressure average= 18.0 (max was 19.5) My range set is 5-20
Hi fenderplayer69, Welcome to the forum
AHI is Ok but doesn't tell us how you feel and sleep quality
The average pressure is the pressure (leak as well) been AT and BELOW for 95% of the time. Whats your titarted pressure?
It doesn't tell us how long stayed at 18 just that it got to 18 at some point.
You need to look at the ResScan software (which is recommended and available to download from here) pressure graph to see whats going on. ResMed define large leak ABOVE 24 L/min, anything above can affect the accuracy of the data and sleep quality.
If leak is driving the pressure up then need to be fixed.
EPR can for some people make breathing against pressure more comfortable and usually BiPAP is prescribed for high pressure as pressure support can be set higher than EPR 3 max settings.
You can view the data on the card yourself using ResScan or Sleepyhead. (both found here
). You can adjust the pressure yourself, as well. (manual found here
Since your machine is set to 'wide open', you don't know if it is the pressure that is making your mouth open (nasal pillows are not recommended for over 15) or if you are just a 'mouth breather'. You fit into this category if you snored with your mouth open. Looking at the data would help with determining if a full face mask (FFM) is necessary (if the pressure regularly goes over 15) or if a chin strap would work for you. FFMs can take a while to get used to. With your history of mask phobia, if you have to go FFM, you would be better off with a hybrid. (part nasal pillow, part mouth covering).
They probably set it this wide in order for you to 'self titrate' which is what that second test should have done for you. Your doc and you can look at the data and determine what pressures would be best.
You've only been using the machine for a few weeks, if that long. An AHI of 5 is good for someone who has been using it only a short while. You want that number as far below 5 as possible, although as long as it is below 5, you're doing great.
The difference between a bilevel PAP (BPAP or BiPAP) is the difference between inhale and exhale pressures. Normal PAPs go up to 3 points different with exhale/inhale relief. On your machine, that's what the EPR is. Bilevel PAPs however, can go more than 3. The machine senses when you are going to inhale and drops the pressure down then goes back up when you exhale. For many people, this can be hard to get used to.
Take a look at the data then narrow that gap some. If you regularly go as high as 19, then leave the top number at 10. The bottom number needs to be high enough that you feel you are getting enough air (you really are, it just doesn't feel like it). I suggest no less than 6. Look at your data and see what your usual low is and set it there.
Regardless of all this, you need to speak to your sleep doc or RT. You are too new at this to fully understand what your body needs (because it doesn't know yet either).
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09-16-2012, 12:55 AM
(This post was last modified: 09-16-2012, 01:19 AM by vsheline.)
(09-14-2012, 03:16 PM)PaulaO2 Wrote: you don't know if it is the pressure that is making your mouth open (nasal pillows are not recommended for over 15) or if you are just a 'mouth breather'. You fit into this category if you snored with your mouth open. Looking at the data would help with determining if a full face mask (FFM) is necessary (if the pressure regularly goes over 15) or if a chin strap would work for you. FFMs can take a while to get used to. With your history of mask phobia, if you have to go FFM, you would be better off with a hybrid. (part nasal pillow, part mouth covering).
The difference between a bilevel PAP (BPAP or BiPAP) is the difference between inhale and exhale pressures. Normal PAPs go up to 3 points different with exhale/inhale relief. On your machine, that's what the EPR is. Bilevel PAPs however, can go more than 3. The machine senses when you are going to exhale and drops the pressure down then goes back up when you inhale. For many people, this can be hard to get used to.
I do well with a FF mask, the ResMed Mirage Quattro, plus a ResMed Gecko leak guard to eliminate leaks around eyes and bridge of nose.
Turning EPR up to 3 cmH2O may help, but I recommend not increasing it by more than 1 cmH2O per night, because a higher setting takes a night to get used to.
I read somewhere that people needing a pressure of 15 or higher should be prescribed a BiPAP machine, because most people needing high pressure do better with 4 or more difference between inhale versus exhale.
On the ResMed S9 VPAP-Auto, the Pressure Support (Pressure Support is similar to EPR except EPR lowers pressure during exhale and Pressure Support raises pressure during inhale) can be set as high as 10 cmH2O, if desired.
The way the VPAP-Auto works is, the Pressure Support (differnce between EPAP and IPAP) always stays fixed at whatever amount it is manually set to. If in Auto mode, the pressure range is set (minimum EPAP and maximum IPAP), and the machine will automatically adjust itself as needed, within the range. This is pretty much the same behavior as an S9 Autoset machine when it is in Auto mode, so the primary difference is the ability for Pressure Support higher than 3.
You will need to fire up the ResScan or SleepyHead software to monitor your data, so you can see whether you are having too many clear airway (Central Apnea) events, which would indicate an Adaptive Servo Ventillator (ASV) class of machine may be needed rather than an APAP or BiPAP class machine.
Actually, most of my apneas are CA events, so I might do better with an ASV class machine. I plan to ask my doctor about this when I see him in a couple weeks.
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Again, thank ALL of you for your suggestions and your personal experiences too. As I said, I had setup so many people since 1994-2003 on CPAP, BIPAP, oxygen concentration, LOX, and even trach patients on compressor therapy, which just never prepares you for personal experiences. As they say, "doctors can make the worst patients. . ." and a little knowledge can be a dangerous thing.
I do have some good news though, last night I was able to sleep for close to 8 full hours finally on my machine and full face mask. BTW it is a Mirage Quatro. Now, my pressure still went to 19, however, my AHI was only 2.2! It's kind of funny though because at around 3am I woke up holding my mask and headgear in my hand! My wife said it had to just happen because she had just gotten up and I was wearing it and sleeping. I truly think I AM going to push trying the BiPap because I apparently begin having a lot of my apnea around 3am and this is when the machine will almost max out I strongly believe that this is when I begin having trouble exhaling against the high pressure. I will keep posting after I see the doctor. Hopefully my personal experience can help someone else that is going through the same thing. In closing I told my wife just yesterday that I have had pneumonia like 8 times since 2000, now sleep apnea, and I truly hope that as I approach my 50's, I hope that I do not progress and have other respiratory problems (COPD or CHF) I never really smoked (although my parents did and even my wife did until around 1998 but not in the house or car since around 1991) however I was exposed to asbestos in the military being I worked on heating equipment from an Air Force base built in the late 1940's, and then I also worked with Formaldehyde for several years in the medical field, and for the past decade I have worked at a coal fired power plant with a huge coal pile that sits outside. Coal gets EVERYWHERE, including inside your completely closed up vehicle. You can't help but think something has caused the problems I have had and are having!
I too have had the occurrence of waking up holding my mask in my hand. It is not uncommon when you are fairly new and it does get better with time. However, I still have the odd night every couple of months or so that I have a repeat. Not to worry, just put it back on and go back to sleep. Technically you are within what is considered the good range (5 or less) for you AHI. I have found that the longer you are one the CPAP, the more you get used to it and the better your AHI (YMMV). Mine bounces all over but is usually just a tad of 1. Out of the blue the other night I had a 4, but this is one of those things where you just have good nights and bad nights. I don't even care what my nightly AHI is. Even my weekly AHI is really not important in the long run. I use Sleepyhead software and my concern is the long range numbers. The "Last 30 days, Last 6 months and Last Year" is what I try to keep on my radar scope.If you can keep those numbers at or under 5 and if you feel good, you must be doing something right! Stressing over one or two nights is unproductive and will just make you crazy! In my case I find how I feel is more related to my RERA number than my AHI number! But that is just me.
BTW, life does not go straight downhill at 50! LOL! I smoked for years, have been exposed to God know what all and aside from a bit of asthma, I am fine so I would not go looking for trouble. It has a way of finding you all on it's own!
Good luck with your therapy.
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.
PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
Well after about 3 months of the S9 Autoset, I met with one of the founding Pulmonologists in the group I see. He has about 35 years experience and I used to set his patients up on home oxygen, home aerosol meds, and CPAPs. He looked at the data from my machine. Still after 3 months, I was not feeling much better at all. The AHI was avg. at 1.5 and my pressure would auto set at 19.0- 20. During this time, I talked to several people on therapy as well as an RT I have known for 20 plus years. We all thought that BIPAP might be a MUCH better fit. The physician agreed. He prescribed a S9 VPAP Auto from Resmed. I LOVE this machine. I have had more 6-7 hour nights since I have had this machine. I love that it has a mask leak alarm, and a lot of other settings. Here is the thing though. The DME I used, I called them as I was leaving the physican's office to let them know I had the Rx in hand. The RT was not in at the time. She finally called me back two days later and said she does not stock this machine and would have to order it. She said it would take 2 days. A week later, when I hadn't heard from her, I called back. She was not in so the CSR called her to find out if my machine had arrived. I had handed off my cell phone to my wife as she had to go to the store. My wife called me about 20 minutes later saying the RT called and was EXTREMELY rude and told her that I could "come and pick up my prescription and take it elsewhere"! I was floored. This is a NATIONAL DME company and I know from working with them in the past, they would not like a small town therapist telling a BIPAP patient to go elsewhere. Especially since all I did was ask if the machine that was supposed to take 2 days had come in on the 8th day. The funny thing was, the company's corporate office called me that afternoon about ordering CPAP supplies. I told them what had happened and within the hour, I got a call from the Regional Manager telling me that he was sorry and that he would make sure my machine was there by the next day. He kept his word. When I got off work, my wife and I went to the office to turn in my CPAP and get setup on my BIPAP. Well, oddly enough, the CSR was the one who handed me the machine. There was NO demonstration, there was no explanation about the machine, there was none of that, that I know from being a former manager, that as a "clinical patient" State Law, JACHO, and other agencies require the RT to set the patient up. The good thing is that I am doing SO much more better. I have seen this all before though. Some of the therapist I have worked with and have worked for me in the past have felt they know much more than the doctors, and that they are very arrogant. I feel that I may need some settings tweaked, and the therapist did not even engage the comfort controls on the VPAP Auto. I had to set it up to adjust the humidity and the temperature.
The reason I am going into all of this is that I am a STRONG believer in taking control of your treatment. I am not a person that likes to be lead around or told what to do, especially when it is NOT my physician and especially when I know differently, personally. I strongly suggest if you are treated as such, you do not sit there and let yourself be treated that way. These companies ARE making money and YOU are the CUSTOMER, the PATIENT, etc. This is one thing wrong with the US today, Customer Service seems to be a thing of the past, and that makes me CRAZY!!!
Thanks for everyone's help and suggestions!
(01-26-2013, 12:51 AM)fenderplayer69 Wrote: ... She finally called me back two days later and said she does not stock this machine and would have to order it. She said it would take 2 days. A week later, when I hadn't heard from her, I called back. She was not in so the CSR called her to find out if my machine had arrived. I had handed off my cell phone to my wife as she had to go to the store. My wife called me about 20 minutes later saying the RT called and was EXTREMELY rude and told her that I could "come and pick up my prescription and take it elsewhere."
Does she get paid on a straight commission?