Need advice before next doc appt

I have been using CPAP for over a year now. It does NOTHING positive for me. I have tried NUMEROUS masks. All make my face break out BAD. Doc says there is no way I can be allergic to them, which I understand, but I make sure the mask is not too tight, etc. My face (and skin) HATE anything touching it. My skin/face becomes very itchy, and my skin flakes/cracks/turns bright red....and becomes very sore quite quickly, and take me a week MINIMUM to even begin to heal. Doesn't matter if I use nasal pillows, nasal mask, etc.
Next, I do NOT sleep well with the machine. I wake up MANY times with the tubing wrapped around my neck. I can't get into a deep sleep at all. My night sweats are a million times worse with the machine. I sweat so bad I can wring the sweat out of my clothes into a cup. And the sweat has an AWFUL smell to it. My fiance says I am worse sleeping with the machine than without. I shake and kick bad in my sleep still with the machine, still stop breathing, and the sweating is just unbearable. He says I twist and turn and even kick him HARD when I wear the machine.
The past 2-3 weeks I just gave up. I have no more quality of life. The doc doesn't seem to do much. He just increased my pressure from 6-8 (a titrate sleep study showed a pressure of 5-6 worked well with me). This change was done 6-8m months ago. In the past few weeks without the machine....I sweat A LOT less if at all, and the sweat does NOT have that nauseating smell. I seem to get into a somewhat deeper sleep....as in I will have an occasional dream. I still NEVER feel like I have a refreshing sleep and feel like death, but if I had to choose between the lesser of the 2 evils, no machine works so much better for me. I used it for 6-7 months non-stop not missing a night to make the doc and insurance happy. I can't keep doing this. I feel like hell and have no quality of life anymore. I want my life and energy back. I don't want to live this way anymore, and don't know how much more blunt I can make it to the doctor when I tell him I don't want to live feeling like this anymore, your treatment is clearly NOT working, and if I have to continue living like this...I will clearly end this AWFUL life!!!!!!
I need advice and help...it is affecting my life every way...work, social life, health, etc. I am in bed a lot sleeping almost all the time, falling asleep all the time (driving, working, eating, etc). This is no way to live.

you clearly need to find another doc
and it sounds like you are allergic to the masks you are using too

Doctor told me it iwas impossible for me to be allergic to the mask due to the material it is made out of. If it is not an allergy, it is some sort of sensitivity

DancingRT wrote:Doctor told me it iwas impossible for me to be allergic to the mask due to the material it is made out of. If it is not an allergy, it is some sort of sensitivity

if you believe him fine if not it is time to see a skin doc

Hi, too bad you didn't come here for help before now! The two major issues are common problems here and have relatively easy fixes... For your face, Google Pad-a-Cheek.com which is a site created by a forum member and the product(s) are 'liners', very thin, reusable and well made. They act as a buffer between masks (you're not the only one with dermat. problems) and also really help with minor leaks. As far as the hose thing goes, again, look up Hose Buddy... a bit like a little IV pole at the side of the bed - it keeps the hose up and away seeing as all are on swivels anyway, plus many of us have used the headboard to loosely attach the hose to, and even ceiling hooks.

If you're having sweating, either you have the humidifier temp much higher than necessary, or possibly your pressure setting is so low that you not only can't breathe comfortably, but you're having real symptoms of untreated OSA. Does your machine not give any data besides for 'compliance' (hrs of use) for the insce. co's benefit (and none for you)? Most of us use software (free on the forum) to track progress at night (well, the next morning ) on our computers and as many things are involved in good therapy, we can see quickly what's working and what's not, and get an idea of how to fix those...

What are your pressure settings?

DancingRT wrote:Doctor told me it iwas impossible for me to be allergic to the mask due to the material it is made out of. If it is not an allergy, it is some sort of sensitivity

Dancing, it sounds like contact dermatitis -- the "irritant" kind, if not the "allergic" kind. When I started PAP I got a terrible case of contact dermatitis on my scalp where the headgear straps go. It took a lot of work and time to heal.

I really sympathize with what you're going through. My sleep quality deteriorated for a very long time -- over a year -- after I started CPAP two years ago. It's better now, enough so that I can use it regularly, but still a far cry from good sleep.

How can we help? What kind of advice are you looking for -- the skin/mask issues, or the therapy/pressure issues? Both? Are you trying to decide whether to keep trying or discontinue? I remember when you first came on the forum and I'm sorry you've been struggling this whole time.

Let us know more about what kind of input you need.

I have tried Remzzzz's which did NOTHING to help my face. I don't have too much of a problem with leaking. I have changed the humidity several times...which is the ONLY thing I can change other than the ramp. I am not a mouth breather. I have the ResMed S9. My most recent mask (in a series of many masks I have tried) is the ResMed Airfit pro which I HIGHLY DO NOT reccomend to anyone. WORST mask EVER. I am on a CPAP of 8. A sleep study showed me being "well controlled" with a CPAP of 5. As for settings, the doc has the machine locked so I can't get into anything. I know there has to be a way to get into stuff. I may be an RT, but don't work with CPAP machines often. But I do know all the ins and outs of trying to adjust/fix the masks. This is how I got a hold of so many different types of masks....from the vendors. But why is my quality of sleep a million times worse with the machine that is supposed to help me?

You show the S9 Elite machine in your profile. That's a full efficacy data machine. There is free easy to use and obtain software that will work with the S9 Elite. Check out my signature line. Let's use the software to evaluate the effectiveness of your therapy to see if anything stands out that might explain the lack of improvement in your symptoms.
Use the software and then post an image of a typical detailed nightly report with the graphs. Main graphs to look at
On the right side...Events, Flow rate, Pressure, Leak and Flow limitation.
On the left side...the AHI and event category bar graphs.
This thread talks about how to get the images as well as how to post them so we can see what you are seeing
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

You are showing the Swift FX Nasal pillow mask with the Bella Loops headgear. Where does it cause the skin to break out....just the nostrils or also along the cheeks where the straps are??? Have you tried something like Lansinoh lanolin ointment as a barrier?
Which mask gives you the least amount of trouble?

How to get into the ultra secret clinical menu...easy.
http://www.apneaboard.com/resmed-s9-cpap-setup
There's also a video at the bottom of the page and for a pdf of the manual explaining things here..
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf

DancingRT wrote:I have tried Remzzzz's which did NOTHING to help my face. I don't have too much of a problem with leaking. I have changed the humidity several times...which is the ONLY thing I can change other than the ramp. I am not a mouth breather. I have the ResMed S9. My most recent mask (in a series of many masks I have tried) is the ResMed Airfit pro which I HIGHLY DO NOT reccomend to anyone. WORST mask EVER. I am on a CPAP of 8. A sleep study showed me being "well controlled" with a CPAP of 5. As for settings, the doc has the machine locked so I can't get into anything. I know there has to be a way to get into stuff. I may be an RT, but don't work with CPAP machines often. But I do know all the ins and outs of trying to adjust/fix the masks. This is how I got a hold of so many different types of masks....from the vendors. But why is my quality of sleep a million times worse with the machine that is supposed to help me?

Dancing, are you out of the compliance-checking period? If so, and if you don't mind being a little rebel ( ) you can buy your own SD card, pop it into your machine, and then you will be in control of the features and settings. Are you using SleepyHead to see what's going on throughout the night with your therapy?

Re masks -- FWIW, I found the silicone in the ResMed masks irritating to my skin, but I did great with the Aloha nasal pillow mask. Apparently all silicone is not created equal. I don't know what materials the Remzzz liners are made of -- did you try Pad-A-Cheek? When I had the mask dermatitis I went to the fabric store and got some cotton flannel and some unbleached cotton muslin and cut out some liners for myself.

I was looking back at your posts when you joined the forum -- I now remember you have some pre-existing conditions including one that relates directly to sleep. As far as you know is there something about PAP therapy that aggravates the other condition(s)?

Oh yeah -- video tutorial for the S9 machine is helpful, use the link in my signature box.

I do have a card for the machine. I bring it with me to the appts. Doc says the machine seems to be "working well" controlling apneas, very few leaks, etc. He showed me the print out. But what the data shows and how I feel are two different things. Just telling me to come back in 8 months (which I see him mid August) doesn't fix the problem. 8 months is a hell of a long time to wait when your sleep quality is shitty. I physically feel WORSE. This is no way to let someone live for 8 months when their job and whole life is affected. I am truly to the point where I have no will to live anymore if he can't help me have a life again. And YES I do have other sleep diagnosis: Kleine-Levin Syndrome, Fibromyalgia and chronic fatigue syndrome to name the worst of them

DancingRT wrote:I do have a card for the machine. I bring it with me to the appts. Doc says the machine seems to be "working well" controlling apneas, very few leaks, etc. He showed me the print out. But what the data shows and how I feel are two different things. Just telling me to come back in 8 months (which I see him mid August) doesn't fix the problem. 8 months is a hell of a long time to wait when your sleep quality is shitty. I physically feel WORSE. This is no way to let someone live for 8 months when their job and whole life is affected. I am truly to the point where I have no will to live anymore if he can't help me have a life again. And YES I do have other sleep diagnosis: Kleine-Levin Syndrome, Fibromyalgia and chronic fatigue syndrome to name the worst of them

If you are indeed an RT why have you not searched out another sleep doctor? Why not check your own data?

I have tried to get the data off and failed. I work in a facility where any of my patients with sleep apnea have trachs and on a vent. I rarely use the CPAP machines. I am really thinking of getting a second opinion, my fiance is pushing for it. The main reason I hesitate is because the doc is close to very close family friends, and afraid of causing issues. Also, my insurance only covers so much, and I only have so much money. I am limited in the amt of hour I can work (and am NOT on state aid), so limited money wise. But I am going to be quite blunt at this doc appt in mid August. He NEEDS to fix the problem. Listening to my heart, asking some questions, etc, is NOT fixing and addressing the real issue. 8 months is too long to wait to see a doctor when you feel this awful and possibly doing more damage to my body. When sleep is bad and affecting your social life, love life, job, health, etc...something needs to be done. I WILL be upfront that the mask IS causing issues to my face...and NOT in my head. Ii have pics to show him. The machine not working is not all in my head. And my fiance is coming to tell him the distinct differences between me sleeping with/without the CPAP.
I thought for sure when I was diagnosed (and doc and I were both SHOCKED with the diagnosis since I don't fit the "typical" description of an apnea patient. I DON'T snore, gasp for air, wake up gasping for air, am not over weight, etc) getting the machine would be just what I needed to feel better. I was actually "excited" to get started and get on with my life. Went into this with a good attitude, and since then, this experience has turned into a living HELL and done the opposite. I try to get advice from you guys since you guys seem to have better advice/experience than most medical professional I know or work with. I am so desperate to not live this way and be able to be "normal" again

DancingRT, there are a couple of things that concern me about your post: if you are concerned about the doc being close with close family friends, you should not be. There are laws in this country that prevent docs talking to ANYONE about your health without your permission. It's called the HIPAA law, and it does have teeth. Make sure you are aware of your rights under that law. Secondly, if your doc thinks there is such a thing as a "typical" apnea patient, they are woefully uneducated. On this forum there are tall, short, slim, overweight, young, and old patients. Children can get apnea at a very young age: sometimes a tonsillectomy will fix it for a while. I probably had apnea before I was 10. I was always extremely active at that time, and lack of weight was more of a problem than too much. I probably could have been the poster child for the young weakling who always had sand kicked in his face on the beach. Neck/throat anatomy does seem to make a huge difference, but don't expect the apnea patient to always have a large neck size - I don't. Not everyone snores, either. Finally (for now), are you aware that there are cloth masks, by Circadiance? These should not cause you the skin problems that you describe, but also experiment with unbleached cotton liners, as they may protect your skin better. Make sure your face is really clean so that you can be sure the dermatitis is caused by the mask and not by your skin oils being trapped by the mask. Although obviously you want some kind of barrier there to prevent the mask touching the skin, at least for now.