Help! Apnea seems better than the treatment!

[sha_pirotess]

I just found out I have obstructive sleep apnea. I didn't really seem to have a lot of sleep issues beforehand though I was tired in the day. Never really snored. The only reason I had a sleep test is recent (still undiagnosed) heart issues related to hypertension that I've had since about 3 years old.

When I had my sleep study to find my pressure and such, I really didn't get to try anything other than the nasal mask because my technician was so sick she was throwing up and had to go to the hospital by the time I got up in the morning. I woke up with a visible and painful bruise on my cheek and my teeth had dug into the inside of my upper lip. Despite this, I did sleep okay so I thought maybe I would just need to get used to it or maybe another mask would work. I was told that when I went to my medical supplier, I would get to try on masks there.

When I got there, they had already picked it out, rushed me through paperwork and explained that I have to wear it four hours every night for my insurance to cover it. I tried it for three horrible nights. The headgear didn't fit but though some internet searches I figured out how to fix that. Still, even with the headgear in place, the mask itself covered to the opening of my mouth and just below the eyes where it leaked air all night long. (I have small facial features, especially my nose) I had enough and called the medical supplier for a new option for a mask.

Last night was my first night with the ComfortGel Blue, which is just another nasal mask and I had no option as to what I got. I slept for two hours, woke up and cried my eyes out because I am so exhausted from these four nights of pretty much no sleep. Still it leaks into my eyes and now this one hurts my cheeks and, like the one at the study, pushes my teeth into my lip. I wore it, being awake for the rest of the required time before taking it off, hanging it above my bed and going to sleep without.

Is the lack of my say in what mask I have normal? Is there some process that the home medical suppliers use such as 'you have to try this, this and this before we'll give you this'?

I have done some research and I wondered, would the nasal pillow work better considering the issues I seem to be having?

Also, my machine has the System One Heated Humidifier built into it. I don't know if it is working or not, however because my sinuses feel very dry after a while. I'm not sure how to tell if it is working. What I do know is that the air doesn't feel any warmer or moister, despite me turning it up to 4. There is never any condensation on any of the equipment though last night when I took the mask off I did notice I had some droplets of water. (Maybe from washing?) I'm not sure how to tell if it working. Should I feel some warmer/more humid air coming from the vent in the mask?

Thanks for any suggestions or answers you guys can give. I'm trying hard not to toss the whole thing out the window.

[cowlypso]

I don't notice much of a subjective change in how the air feels with my humidifier turned up higher or lower. What I do notice is that, inside the humidifier tank, there's condensation on the sides and top above the water line. If your humidifier is working, you should probably see that.

You absolutely DO have a say in what mask you use. You must have a very bad DME if they aren't listening to you at all (don't feel bad - most of them are very bad!). If you want to try a nasal pillows system, then tell them that's what you want. Don't accept anything else, and don't accept their excuses. The DME can return any mask back to the manufacturer for a full refund if it doesn't work for the patient (within 30 days), so don't let them bully you. Do your research, decide on what you want to try, and demand it. Don't let them push you out the door with something that is not comfortable, doesn't fit, or isn't what you want. Does your insurance company allow you to choose which DME you use? If they participate with several, then go visit a few others to get a feel for them. Go with the one that you feel comfortable with, and one that will actually help you out.

Don't give up just because of a crappy DME. Once you find a good mask, you will be a lot more comfortable, and you might even feel better! My only symptom was daytime sleepiness, and that has just about disappeared now that I've been on CPAP. I absolutely refuse to sleep without my machine now because I feel so much better. Plus, hypertension and heart problems can be caused (or exacerbated) by untreated OSA. If you already have these issues, then you owe it to your health to give CPAP a good try.

Don't give up! Ask any questions that you have. Demand that the DME treat you as a customer, and not a number. Get what you want and make sure you understand everything before you leave the store.

[Emilia]

Hi... and welcome to the forum. I am so sorry you had such a rough start to this. Your study experience and the horrible way you were treated by the DME is inexcusable, but also all too common.

It is a bit late, but you need to read Janknitz's blog on dealing with these characters: http://maskarrayed.wordpress.com/what-y ... me-part-i/

You have 30 days in which to return any mask and try on new ones. DME's are given a generous try on, return policy by the manufacturers. Do NOT let them tell you otherwise! Getting the right mask if 90% of the process of succeeding. There are many types of masks from which to choose, and you may do better with a nasal pillow mask, many of which are as light as a feather to wear and won't hurt you. Fitting any type of mask is a bit of an art.... it can be done!

Do you have a copy of your sleep study? Do you know what your pressure settings are on your machine? All these things are crucial for you to know and understand for your therapy to be successful. We can help you here, but you must do your homework and become a knowledgable and empowered patient. You are entitled to copies of all your medical records....get the study and a copy of your Rx for your machine/mask. CALL your Insurance company and see if there are other DME companies you can use other than the one that rushed you through the process. I suspect your doctor and they are in cahoots. You do have the right to use any DME your insurance works with.

If the machine in your signature is accurate, you have a good and fully data capable machine. If you are tech savvy enough (and it would appear so as you knew how to set up your profile correctly here... an A+ for that! ), you can monitor your own therapy via software and tweak things yourself to manage and succeed. The DME/Doc are only interested in your compliance of 4 hours a night, and they certainly won't be available at the drop of a hat to help you with your settings. Learn to do this yourself. DO NOT mention software to them.... they will tell you patients have no access to that. They LIE. We do and we use it to manage it ourselves.

You have a lot to learn here... keep reading and asking questions.

[JohnBFisher]

Agreed. If they fail to respond, get your insurance company involved. They should help you get action. But be the polite, but insistent patient that won't take "no" for an answer.

When I could use them, I *loved* the nasal pillow systems. I must have used them for 12 to 15 years. And they've gotten even better (from what I can tell).

But also do your research on why you need to stay with the therapy. As you've probably seen, untreated sleep apnea can lead to high blood pressure. That can lead to heart problems, strokes, kidney failure. The continuous struggle with sleep can lead to weight gain, high blood pressure, heart problems, and an increased risk of Type 2 Diabetes. And there's fairly new evidence that obstructive sleep apnea can greatly increase the risk of dementia!

So, the benefits do outweigh the problems. But it sure can be a struggle. We understand and will do what we can to help.

[sha_pirotess]

Thanks for the reply!
I'm not sure if my insurance will work with another DME but I might call and ask. I know that the one that I have was pretty much assigned to me by the sleep doctor so it might be the case that I have to use them. (I have student health insurance so they are VERY picky about who I use and must have referrals for everything!) If I have to stick with them, I may just try to push my way around though I'm not the pushy type.
I'll check my humidifier tomorrow morning when I get up to see if it seems to be working.
If I do end up going to another DME, can they return the mask I have to the manufacturer or do I have to still take it back to the other company?
Thanks for the article Emilia and the info JohnBFisher!
I don't have a copy of the sleep study and the sleep doctor is much like the DME in that he is kinda like 'Hi/Bye' when I go. I think I will do research on the software. I have learned through other health problems that you pretty much have to be your own advocate and doctor in many instances. My machine has an SD card in it so it should be pretty compatible with my laptop.
I'll definitely stick around thanks to the awesome replies. I definitely feel like there is much more hope than I did when I woke up last night. I hope that I can look back on this later as a great learning experience that maybe can help someone else with similar issues.

[Pugsy]

I use the PR System One Auto CPAP myself. I have the clinician manual in pdf format. It will help you understand the humidifier settings. Send me a PM with your private email address and I will send it to you as attachment (we can't do attachments with forum messages).

As far as the air actually feeling warm? I don't find that to be the case. The humidifier has 2 modes of use and I have tried both. Neither is particularly warm or cold to me and I use a high setting as I need lots of added moisture.

Ditto on what the others have said about the mask. You most certainly have a say in the matter. Get a mask that you want and suits you. The mask use is the hardest part of this therapy and if it doesn't fit or causes pain, something is wrong.

You also have some software options. When you have time please read this as it explains the options and shows some examples.
viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options

[LaurieP]

Welcome to the board!!! Reading your post brought back my first week also. It was horrible and I was a mess. I was so exhausted, crying at work and was just ready to threw in the towel when I found the wonderful people on this board. I switched my mask for the Swift LT and my whole outlook changed. The mask is the biggest thing to get right. Don't give up!!! After you found a mask that works for you the other problems can be fixed by posting your questions here and someone will come along and help you out with a solution or helpful ideas.

I love this board and read everyday.

Good luck!!!!

Hosehead for the last 3 months and have been very successful cause of the people here....Laurie

[BlackSpinner]

Thanks for the reply!
I'm not sure if my insurance will work with another DME but I might call and ask. I know that the one that I have was pretty much assigned to me by the sleep doctor so it might be the case that I have to use them. (I have student health insurance so they are VERY picky about who I use and must have referrals for everything!) If I have to stick with them, I may just try to push my way around though I'm not the pushy type..

No In fact I believe that is illegal in many places.
You have the right to all your medical information (HIPPA rules) In fact you WANT a copy of your prescription in case of travel emergencies. Nothing like being in a strange place with a broken mask, or other part.

You need to be pushy YOUR health depends on it. Compare it to diabetes, they check and monitor their insulin status and adjust their diet/insulin accordingly. This is AIR, it keeps your heart beating properly and your brains functioning, do you want to leave this up to strangers?

[archangle]

Thanks for the reply!
I'm not sure if my insurance will work with another DME but I might call and ask. I know that the one that I have was pretty much assigned to me by the sleep doctor so it might be the case that I have to use them. (I have student health insurance so they are VERY picky about who I use and must have referrals for everything!) If I have to stick with them, I may just try to push my way around though I'm not the pushy type..

No In fact I believe that is illegal in many places.
You have the right to all your medical information (HIPPA rules) In fact you WANT a copy of your prescription in case of travel emergencies. Nothing like being in a strange place with a broken mask, or other part.

You need to be pushy YOUR health depends on it. Compare it to diabetes, they check and monitor their insulin status and adjust their diet/insulin accordingly. This is AIR, it keeps your heart beating properly and your brains functioning, do you want to leave this up to strangers?

It's usually legal for your insurance to specify that they will only pay if you use certain DMEs or doctors. Or that they will pay less for some.

They have to give you your medical records, but they can charge you for them. Sometimes, your doctor will rip you off less than the sleep clinic, sometimes not. If they object, mention that it's a "HIPPA" requirement. Sometimes that puts the fear of god into them. Sometimes, they think they are God and don't scare easily.

[archangle]

Welcome to our miserable little community, sha.

I love your avatar.

You can probably work your way through all of this. Whatever the problem is, someone here has probably been through it. If you can handle the air, the mask problems can probably be worked out.

First, let's figure out which CPAP machine you actually have. The one you list in your profile is wrong. I assume it says "Philips Respironics" on it. Next to the display, it should say something like "REMstar blah blah blah." What does it say?

You're probably going to have to get medieval with the DME. Many DMEs are lower on the ethics scale than used car salesmen. Some are OK, but just in a hurry. Some are stupid, but not malicious.

[archangle]

Also, my machine has the System One Heated Humidifier built into it. I don't know if it is working or not, however because my sinuses feel very dry after a while. I'm not sure how to tell if it is working. What I do know is that the air doesn't feel any warmer or moister, despite me turning it up to 4.

Before you use it, take the water tank out and feel how warm the metal plate on the bottom of the tank is. Put the tank back in, hook up, and start CPAP. Turn the humidity all the way to 5. Use it for a while. Turn it off, and take the tank out of the machine and see if the metal plate is warmer. I don't think it ever gets hot enough to hurt, but touch carefully just the same.

The PRS1 (Philips Respironics Series One) machines have a "smart" humidifier setting that senses the humidity of the incoming air and uses less heat and humidity if the air is already damp enough. There is a secret setting in the menu to turn this "System one humidifier" off. If you change this, it will do "dumb" humidification and simply heat the water to different levels. We can tell you how to do this later if you want to.

By the way, if you're having trouble meeting the 4 hour time, you can wear the machine while you're reading, watching TV, etc. This will get your hours up and help you adjust to the machine. You can't trick the machine by just turning it on, though. It senses breathing and won't count it if you're not breathing.

It's possible you are leaking air out of your mouth. Does your mouth get dry? If so, there are things to do to help fix mouth leaks.

[archangle]

You might try a "boil and bite" or other athletic mouthguard to keep the mask from hurting your lip. They're pretty cheap and you can find them at Walmart or other places. It might make the problems worse, but you won't be out a lot of money.

There is a click adjustment at the top of the nosepiece for the ComfortGel mask. Have you tried adjusting this to pivot the nosepiece out at the bottom and in at the top?

There are a number of gadgets to help with leaks into the eyes.

https://www.cpap.com/cpap-comfort-clean ... #/0:::::20:

[Resister]

I saw the title of your thread, and immediately I can sympathize! I'm a newbie too--just a month in--and sometimes it does seem as if the treatment is worse than the apnea. However, it's important to make a go of it. Depriving ourselves of air is taking away a basic human right

Best wishes and welcome.

[DaveLP]

sha_pirotess, now is the time to get all of this straightened out. Insurance or not, you paid a lot out of pocket to get the sleep study done and you will have to pay copays or maybe all of the CPAP machine if you have a high deductible, so get the DME settled down and make them serve you.

Go in with a list of questions written down. Check them off one at a time and hold them to an answer, even if they have to get back to you on the ones they need approval or assistance with. Keep records of your conversations on the phone and TAKE NAMES!

You don't have to be ugly, just calm and insistent. Be organized and don't let them put you off without resolution. Cover all your points, make sure you have an original prescription from your doctor and don't let anyone take it from you except to make a copy. It belongs to you and is lifetime, although they may have to write you a new one annually, at least that is what my Doctor told me. I got mine over the phone and they wrote it for one year, assuring me that all I had to do is call to get an updated one at no charge in the mail.

The mask fit is critical. You should try full face and nasal pillow. Some find that the nasal pillow masks are wonderful and others like the full face mask. You are the one to make that decision based on leaks and comfort.

[beanfruit]

I used the Mirage FX nasal mask my first week of therapy, but called my DME because I was having similar issues as you - the mask would poke into my eye if I was on my side with my head too smooshed against the pillow, and it would also leak and blast a nice little stream of air into the corner of my eye.

My DME suggested I have a petite face and that nasal pillows might help. So, I've been wearing the Swift FX for Her w/ XS pillows the last week. They feel more comfortable, but I don't think I sleep as well with them. I might be in search of another option...

Anyway, just wanting to second the comment about trying nasal pillows as an option! Or maybe a mask that comes in a petite size?