HELP!! I'm about to stop therapy

Long post but I felt that if I was going to get any serious help I would need to explain a few things first. At the end of this post I am including a few graphs. The 1st is from a night using the cpap from about 10:10 pm until about 03:50 am. The 2nd is from the last night I tried to use the CPAP/mask. It was on me only for 37 minutes before I took it off.

For many years my wife had told me that I snored and periodically stopped breathing. We didn’t know anything could be done about that so we lived with it. In Nov 2000 I had my left kidney removed because of cancer. After I woke up in recovery the nurse told me I had stopped breathing and had been hard to wake up. They didn’t seem concerned and I kind of just dropped it and figured it was a normal thing. Last year my son (30 years old) told me his wife told him that he sometimes stopped breathing at night. I had not mentioned my stopping breathing to him before but we talked and I figured we both needed a sleep test. I wasn’t sure how to get one or even if my insurance at the time would cover it so nothing was done. I have had a sleep study but my son has not yet because of money issues. I am still after him to have one. His current reply was he wanted to wait until his insurance year started again due to co-pay and deductable.
To make a long story shorter, I didn’t need chemo and am cancer free so far. In Oct. 2009 my wife and I started to use TRICARE Prime and a Military Treatment Facility. My PCM wanted me to see a Nephrologist (kidney dr) due to only having one kidney. My kidney dr wanted me to have a sleep study and I was scheduled to have it at the local VA hospital in late April. My dr gave me 2 Ambien pills, one for each night of sleep study if needed to get to sleep.
I was told before the test started that they might do what is normally done on a 2nd night if I had 30 or more apneas in an hour during the 1st part of the test. I was asked to try to sleep on my back but could turn to my side if I could not sleep on my back. I decided at the start of the sleep study the I was restless enough that I should take an Ambien to help me sleep. Don’t know if it helped me sleep or not but that was the very worst night of sleep I have ever had. After a very restless attempt to get to sleep on my back I turned to my side and the next thing I knew they were fitting a mask over my face. I found it to be awkward at first but felt grateful for the lower air pressure when I exhaled. Also, I didn’t like the fact that air rushed out my mouth when I tried to talk to let them know I needed to use the restroom. I did get to sleep with the mask but had figured out before getting to sleep that I must have had at least 30 apneas to get the mask on the 1st night of the study. When they woke me in the morning I asked how many apneas I had. The response was “LOTS”.

After my sleep study I started to research OSA and cpap machines and masks. I figured out that I had been tested using a BiPAP and they had used a nasal mask. I knew I needed a full face mask because I would wake up many times with a very dry mouth at night regularly. I decided I would like a ResMed S9 Auto w/H5i Humidifier and Climateline hose if given a choice. I also wanted a Quattro full face mask. The S9 can be set to reduce air pressure up to 3 cm and was hoping that would be ok for me.

After a week or so of waiting for the sleep study results my dr. requested I come in for the results. I was diagnosed with severe OSAHS. My AHI was 77/hr (79/hr on back and 64/hr on side) and my oxygen dropped to 80%. I was prescribed to use a CPAP with heated humidifier at 12 cm with a mask of my choice. I was surprised that I was tested using a BiPAP but prescribed a CPAP. I asked and was told that I only needed a CPAP.
I selected a DME and requested the S9 Auto and was told I could only have the S9 Elite machine w/H5i humidifier, mask and the standard hose because my prescription only stated a CPAP. I purchased the Climatline hose because I thought it would help me. They had to order the Quattro mask and that took about a week for it to arrive.

I knew there would be a certain period of adjustment before I felt comfortable using the cpap and mask, but figured my apneas would stop and I would feel better because I was going to sleep better at night. How wrong I was. I slept terrible even after 2 weeks using the CPAP/Mask. I knew the S9 had a SD card to record my sleep info. I found a way to get ResScan to read the cards data and found I was still having many apneas where I would stop breathing for over a minute and a half. Most apneas were between 10 and 30 sec with a few 40’s and up to 104 seconds. I randomly took one 8 minute period in the graphs and found that my apneas totaled roughly 3 minutes in that 8 minute period. Not breathing for 3 minutes out of 8 minutes can’t be good for me. The S9 indicated I had all kinds of apneas with obstructive being the most common, followed by centrals, then Hypneas, then unknowns.

I am to the point of stopping the use of the cpap because I have such a hard time trying to sleep with it even if I take an Ambien and I feel lousy the day after I use the CPAP. Besides still having lots of apneas I hate having my hot breath on my nose area when I exhale. I tried nasal pillows and can’t breathe out very easy. So rather than be tortured using the CPAP and mask and still having severe apneas while using the CPAP/mask I think I will stop therapy and sleep as I did for my last 64 years.

I am open to suggestions. I printed up a report yesterday and showed my kidney dr. He said he was submitting a request for me to see a sleep dr again. The last night I tried to use the CPAP/mask, I wore it for only 37 minutes and had a computed AHI of 53.5/hr. Other nights I used the CPAP and wore the mask for almost 9 hrs with many apneas also. (1st post and not sure if graphics will work correctly)

You have options. You can try a full face mask and see if that helps. Wearing the mask during the day while doing something else relaxing may help you get used to wearing the mask- even just listening to music with the mask on. Talk to the sleep doc about the problems, a mild (or strong) tranquilizer might help you relax with the mask on. Maybe your pressures need adjusting, you might want to use a long ramp or settling time. Most of all be frank with your doctor. Some people just don't tolerate CPAP, but I would hate to see you not treated by some method. Don't beat yourself up, but please don't give up. I'm sure you'll get more and better suggestions.
Good luck and keep us posted.
Mary Z.

OH geez,
this is way out of my league, cuz I am a relative newbie, but what I can tell you.. is


THAT YOU CANT GO ON WITH THAT MANY APNEAS...

You cant live with all that going on, but you might die like that..

You need the therapy, you need the therapy TO WORK...

so, instead of choosing "cpap doesnt work for me ", choose cpap "make it work.. "

The fact that you are here searching, shows you really do not want to give up, you want to make it work..

You just need to...

FIND OUT HOW TO FIX ALL THESE APNEAS..

This isnt what is supposed to be happening.. I KNOW that..

Someone who is more experienced will be along to help you.

DONT QUIT!

What are your pressure (and other) settings (including Ramp, humidity, etc.) in your machine?
In what positions do you sleep?


Den

To post your graphs you first have to save them to a jpg. Use screen print or the Windows 7 Snipping Tool (Start > All Programs > Accessories > Snipping Tool).
Edit the jpg in a paint or graphics program if you need to edit out your name or other personal info.
Then upload the jpg to a photo sharing site like photobucket. (Go to photobucket.com and click upload.)
Copy the IMG link under the image on photobucket and paste it into your post.

And voila! your graph is posted.

Hi Den, My pressure is set to 12 as prescribed. I have not tried to change that. I have tried the ramp at a few settings, but found I feel that I just can't get enough air when ramping up so I currently do not use the ramp. My humidity is set to 1 with the standard hose but I set it to 65 degrees when I use the climateline hose in an attempt to lessen the hot air around my nose when I exhale. The exhale port on the mask is over the ridge line of my nose. The humidity does not seem to be a problem. I live along the Gulf Coast and air is usually very humid anyway. My mask is part of my problem. It will leak at my slightest move of my face muscles and when I just drop off to sleep my face evidently relaxes and I will normally get a leak either at my cheeks or near my eyes. Very bothersome with that flutter sound caused by the leak. That also bothers my wife who commented that she didn't know what was worse, my snore or the mask leak. I try to keep the mask loose so it is not uncomfortably tight but still seals well.

Sleep position?
EPR setting?

Bed pillows can make a huge difference regarding mask leakage. "Standard" pillows can push the mask out of alignment if the head sinks into it. There are a number of them designed for this therapy or that work better. The one I use is in my profile.


Den

Hi, it sounds to me like you definitely need a machine with at least C-flex, if not A-flex, because that feature makes exhaling a lot easier for people who have a problem. I don't know your financial situation or insurance options, but if you go to Cpap.com and look at the various types of machines, the Respironics ones (whether they are straight cpap or apap) have c- and/or a-flex built in. It is called EPR in other machines. BTW, an autopap machine can generally be run in just cpap mode as well as apap, but of course the reverse is not true. I steered you to look at the machines because as you can see (click where it says to do so for the "real" prices) they may be affordable to you without your having to go through the DME (and get told what machine you can have and not have), plus your insurance co. is very likely to cover it anyway (it's a lot cheaper for them too!), though you must ask them first. It is what a lot of us do who don't want to deal with the DME's. You would need a prescription of course (call Cpap.com and ask exactly what it needs to say for the machine you want), but your MD sounds reasonable and hopefully will give you one. Please click on the lightbulb at the top of the forum page and read your head off, links are very important, and you may want to give yourself and family a better chance of keeping you around for a while after doing so. It would be a shame to have come through your previous trouble only to let something preventable get you now over temporary frustration! And of course you need to try other masks, or at least get yours in the right size and properly fitted.

You have EPR (Exhalation Pressure Relief) on your machine. It's like the C-Flex (A-Flex) Julie talked about on the Respironics machines.

You can set your EPR at 1, 2 or 3. In the case of Resmeds, each level drops the pressure by 1 cm so that at a setting of 3, your pressure would drop 3 cm when you exhale.

Is the EPR set up on your machine and is it 1, 2 or 3? I don't think you mentioned that in your post. If it is only at 1 then raising it to 2 or 3 MIGHT help. You don't need the high pressure when you exhale.

Your humidifier is unlikely to be the problem when you live in a humid area and have a setting of 1.

It is sometimes a good idea to use the machine and mask while awake, just watching TV or reading to help with getting used to it.

I hope you can get this resolved soon. You need cpap.

Thank you for all the help I have received. I know that I need the therapy but could not understand why I was having as many apneas as I’m having. Is this a normal part of therapy? Anyway my pressure is 12 cm with an EPR of 3 cm. I am not using a ramp startup because I feel like I can’t get enough oxygen at low pressure during ramp up so I just start with full pressure of 12 cm.


This was graph of my S9 date for 23 Jun. I only had the mask on for 37 minutes before I took it off. The S9 computed my AHI at 53.5/hr. I believe I had good seals for my mask. My pressure was 12 cm with 3 cm EPR. No ramp and H5i set to 65 degrees using Climateline hose. I had taken Ambien 5mg about 1 hr before trying to go to sleep.


This was graph of my S9 date for 15 Jun. I had the mask on between 10:10 pm and 03:50 am. My pressure was 12 cm with 3 cm EPR. No ramp and H5i set to 1 using standard slimline hose. I had taken Ambien 5mg about 1 hr before trying to go to sleep.

I have read that taking sedatives or pain medication before sleeping can actually make people with apnea forget to breathe. That is the issue I have with morphine, it makes me forget to breathe. I wonder if the Ambien is actually making your apnea worse. Have you tried sleeping with the CPAP with out taking any medications that make you sleepy?

I apologize for the fact that I don't have time to read your entire post, but I see you are in good hands here. A couple things I wanted to add, in case they are relevant:

(1) "Events" that occur while you are awake are not true events, so they have to be ignored.
(2) 5mg of the short-acting Ambien is a very small dose. If it's enough for you to fall asleep, and then you stay asleep through the night, that's fine. But if it's not enough for you to fall asleep, one of your choices is to talk to your doctor about 10mg of Ambien. If you can't stay asleep through the night, then the question is whether you want to consider Ambien-CR. There are other options as well, such as Lunesta, but I am not familiar with those.

P.S. I went back and read your post but I won't be following it because I'm having surgery in a couple of days. You have a great machine that is yielding great data, which you are obviously mastering. So I believe you will get to the bottom of this, with the help of people here, and hopefully your doctor. Also, your machine is capable of running in APAP mode, so one option is to widen your pressure window a bit. For example, if Den thinks it's a good idea, you could try APAP 12-14. I find the S9 to be much smoother than other machines so a wider range is more tolerable to me; however, a wide open range may lead to lower pressures overall, so I'd first try a narrow window. Losing the EPR of 3, if you can tolerate exhaling with a lower EPR, might help also. Finally, it can take months to feel better on CPAP according to the experts, so just because some people feel better within a few days or weeks doesn't mean that is a realistic expectation for everyone.

DO NOT STOP! You need to keep at it. You have a severe problem that can and will take your life early if left untreated. End of story. In the old days they would have said "he died peacefully in his sleep". We know better these days and your graph indicates that you need to perservere. You may need to modify your therapy. I wore my mask and blower running while I watched TV every evening for a while and that helped me get used to it. It still bothers me and wakes me at times but I am better now that for the past 45 years. And I have been told by two top respirologists that my life depends on it. From what I see - your life depends on it too. You may live to a ripe old age but that would be a fluke... and there are plenty of flukes out there. But would you rather not know that the problem is looked after and that you WILL not have your life stolen from you because of this? I think the answer is obvious. You must perservere. It will get easier as time goes by. Try some different masks and settings. One thing is for sure... I have never seen a graph like that before.

glcksc, one possibility no one has mentioned yet is that you may have been mistitrated. Meaning, your titration study may have been completely off for one reason or another, and the pressure they prescribed you could be very, very wrong. You should NOT be having that many apneas still. Having 5 or fewer apneas per hour is generally considered successful treatment - you are WAY above that. I went months without feeling better and my (stubborn and egotistical) sleep doctor not agreeing to raise the pressure that had been prescribed. Finally, I got an Auto machine (prescribed by my GP instead) and found I needed a pressure of 11-12. I had been prescribed a pressure of 6. When the usual range is only 4-20, the difference between 6 and 12 is pretty huge.

To put it in some perspective for you, now that I have the right pressure, I spend an average of 6 seconds in apnea, total, per NIGHT. My average AHI is 0.0 or close to that. Not everyone is able to achieve 0.0, but under 5.0 is what you need to be shooting for.

I can't remember off the top of my head if you said you were using a HEATED humidifier or not. If you are, you don't have to use the heat function. In fact, you don't have to use the humidifier at all! I don't. I like to breathe cool air, so I don't use a heated hose, a humidifier, or anything. You might try using just a plain old non-climate-controlled hose and/or no humidifier and see what is most comfortable for you. Switch things around until you get a combination that works for you.

There's nothing wrong with not using the ramp. Most of us who are used to CPAP don't use it anymore anyway. It's there purely for your comfort, so if it's not helping the comfort, no need to use it!

I honestly don't know enough about your mask and the your particular machine's reporting methods to tell you if your leaks are insanely high or not. Hopefully someone else will come along that can address that.

But I do know that as bad as you feel right now, as tired as you feel right now, stopping therapy would be the WORST thing you can do. Think of how your wife is going to take care of you, or your children are going to have to take care of you, if you have a stroke in your sleep. Apneas like you're having can cause that. Don't let it happen. 50 AHI is horrible, but it's slightly better than 70. Don't take away the one (right now small) protection you have against suffocating in your sleep. But DO get to your sleep doctor NOW and don't let him put you off - having apneas for as long as you are (and presumably the oxygen drops that are going along with it) are very dangerous. It's an emergency - make him fix it NOW.

+1
It IS indeed an emergency from that graph.
I am not suggesting anything here at all, but I found that going to an APAP and cranking my start pressure from 9.8 to 11.8 and letting the machine do its stuff took me from 1 or 2 OSA events to zero. Yep. Z E R O. It improved my SO2 slightly and as a result lowered my blood pressure at night. I use EPR of -2 and it makes exhaling great.
Good luck to you. You WILL get there.