Frustrated and needing to vent.

I don't know what advice or help anyone can offer, but I need to talk about it here because nobody else is going to understand the way I feel. I'm the only person I know with OSA.

I've suspected OSA for at least 7 years. My father had it and died the night he went to sleep without his CPAP. I had a test in 2002 but it was via Kaiser and all they did was send me home with a pulseox. I got marginally better health insurance last year, and approached my doctor in April wanting a sleep study. She referred me to a neurologist that specialises in sleep disorders. It took me 7 weeks to get an appointment with him, and then another 10 weeks to actually have the sleep study. My doctor has not yet provided me with the results of my study, although I did sneak a peek at it at the DME's. All I remember is that my sleep efficiency was in the 60s and my O2 saturation was 82% at the lowest point. It got up to 95% on CPAP. I was diagnosed with severe OSA - recommended 12cm pressure.

I finally got my CPAP machine two days ago, and unfortunately, after being so excited to get it and hoping finally get some sleep, it's making me miserable.

I had no choice in mask or machine, these were the ones prescribed to me. I would have chosen nasal pillows or cannula over a mask, and I definitely would have got a data enabled machine. The machine is set to my pressure and supposedly cannot be changed (I know this to be false, I've found the instructions here, thanks!).

I have very oily, acne prone skin and after one day of use I already had breakouts from where the mask rests on my face, including several very large and painful spots on the bridge of my nose. In addition, there's a red, sore spot under my nose. Wearing the mask last night was so painful that (and this sounds so ridiculous) I cried myself to sleep.

I have the mask as loose as possible without causing leaks and I am sleeping on my back despite it being the worst way for me to fall asleep (I am more comfortable on my side or my stomach). The past two nights I have woken up after 4-5 hours of sleep, taken the mask off and gone back to sleep for a couple of hours.

I went ahead and ordered the Breeze yesterday morning (it should be here on Monday, if I would have known how painful things were going to be last night I'd have got express shipping) and have emailed my insurance company asking if they will reimburse me for it. Getting in touch with my doctor is an exercise in futility.

I am just so frustrated and disappointed. I was really looking forward to this and now it just seems to be a horrible experience all around. I know it can take people months to find a mask they like, but I can't afford to keep paying for the return insurance and the shipping while I find something that works.

Sorry for the whining and the venting. Thanks for reading.

Hi and welcome,

Your frustration is very normal and a lot of us have been through the same things.

You have the M Series Plus C-Flex CPAP Machine listed which is not a data capable machine. (thanks for the correction)
For masks, there are tons of tips on making the durn things fit and finding the right one. Check out the info up in Our Wisdom, the yellow light bulb up on top. Also check out cpapauction.com for masks available at less expense and cpap.com for the best prices online. Certain masks are better for side sleepers or stomach sleepers.

The acne can be persistent and difficult. Wash your face before putting on the mask with whatever product you use or try a medicated soap or solution. You might need to wipe the mask down with more care than the average user daily to help, particularly where you may have problem areas. Different masks may help as well.

Maybe get a new doc and DME. This is your therapy and your choices, not theirs. Get a copy of your study. And hang in there. Lots of us have tried lots of solutions and we;re more than willing to share what we know.

silver

The machine you have listed is not capable of capturing you sleeping information. It will only tell the DME if you are being compliant (wearing more than 4 hours a night). You need to take that machine back and get one that records information that you will need to monitor your recovery.

Your mask sounds as though it is the wrong size. It may have felt all right in the DME office for that half second where you try it on. But if it hurts it is the wrong size!!!! Or maybe the wrong mask. Call your DME today and tell them that you need to trade it in for one that fits. You have 30 days to go back and trade it in don't wait, do it now. If that one doesn't work, trade it in for another one. YOur DME will not tell you that you can do this and they will act as though they can't, but you must be firm and tell them what you want.

Bev

I disagree that you "had no choice". You were taken advantage of by some shysters who had their profits above your therapy.....it happens every day.
They should have at least handed you your prescription......for you to choose where you wanted to have it filled.
You're entitled by law to your prescription and a copy of your sleep study (HIPPA laws). If you can't get your original from the doctor, you should be able to get a copy of your prescription from the DME and the doctor may have had to send a copy of the sleep study to your insurance provider. Other options would be to make yourself a "pest" with the doctor until you get those documents or threaten some action by reporting them to your insurance and/or the state regulatory agencies.

Once you have that in hand, you could have purchased any CPAP machine you wanted......at least from an Internet seller. If you want to be proactive with your therapy, you need to play hardball with these nitwits.

I'd suggest going up to the "yellow lightbulb" icon and reading "Our Collective Wisdom".

Hang in there.

Den

fortomorrow wrote:. I'm the only person I know with OSA.
Sorry for the whining and the venting. Thanks for reading.

...you're not the only person you know now w/OSA.
Here is whole world of people w/OSA......that are more than willing to help you.

..now that the whining and venting is over...it's time for acceptance.

Time for you to take control.
Read everything under the light bulb.
Come back w/your questions. Plenty of answers and options.

Time for you to take control.
Time for YOU to start making this therapy for you.
Time for you to start feeling better.

Hi,

I'm on my 4th week and switching to nasal pillows made all the difference for me. I was having back acne on my forehead and under my eyes. I had to wash the mask everyday and my face twice a day.

Like you I was really disappointed it didn't help right away. After less than 2 weeks I broke and was an emotional wreck. But I kept on going and kept making changes & got something to help me sleep. Just take it day by day and keep making adjustments until you get there.

_z

Thank you for your help. I will read the recommended pages.

One thing: I saw the Rx and it specifically said the machine I got and the mask I got. The DME says they won't be able to give me anything else. Are they lying or should I go to the doctor and ask for a new prescription?

There are many ways to play the game of playing both ends against the middle, and there are many people you may be able to sweet-talk and buddy up to, if you make the right friends and make the right "demands."

You may want first to try speaking directly to the respiratory technician at the DME, not the worker drones who man the phones. Let that person know you are collecting information and names before you discuss it all with your insurance people and your sleep doc, so you can trace back where the "misunderstanding/miscommunication" occured. The calmer and sweeter you say that, the better.

The neuro/sleep doc can be a powerful ally in your situation, since he will want a follow-up visit one day, and it is within your power whether or not he gets the privilege of seeing you again. Call him and leave a very kind message explaining you are "having trouble" with your DME understanding his prescription and you need his help. He may, for example, be willing to write a perscription for a specific machine and mask and have his office fax that to you and the DME that same day. You never know till you ask.

But don't get discouraged if that doesn't work. People on this forum have many tricks to try. Don't give up. Try to make a game out of dealing with the people and find joy when you find a way to get results. No need to get mad. No need to get down about it. It is your life and you are looking for a way to take control and get what you need. That is your right, and good people in the medical profession will respect your attempts to work the system when they see you mean business and expect results when you speak to professionals.

Yeah, life shouldn't be that hard, I know. But it is. And after reading what you wrote, you have everything it takes to turn it around and make it all turn out as well as you originally expected.

jeff

I know from my own personal experience that your doctor can change the script for whatever machine you (and he) agree on. After all, if he tried to prescribe a certain drug that you have an unexpected reaction to, wouldn't you want to get a prescription that will work for you?

My advice? Read, read, read up on the different types of machines & masks that are available. Cpap.com has some excellent comparison charts. DON'T accept a bare bones machine - get one that's data capable. You'll be using it for the next 5 years so get the best you can. DMEs don't tell you that all CPAP machines are under one insurance code, so if they give you one that is the bottom of the line, they stand to make much more profit than one that will actually help you be involved in your OSA therapy/progress.

Be patient - this will be a whole new road for you to travel - somehow a detour slipped in to take you down a path you weren't expecting. You'll meet new friends with lots of great advice. Since they've already been down this road, you can count on them knowing about all the potholes. Take their advice!!!

Good luck & keep in touch,
lktnky

UPDATE:

I just got off the phone with the RT manager at my local Apria. He's going to find my Rx and see if my doctor specified a machine and mask. If not, he is going to trade me out for an APAP or at the very least, a machine with a smart card. He will also take my old evil mask and give me the Swift nasal pillows. He was VERY helpful and kind, which I did not expect.

HOWEVER, I have a very bad feeling that my doctor (who is a control freak) wrote a specific machine and mask on my Rx, in which case I am going to have to fight with him.

And then I'll probably have to get a new doctor.

Again, thank you to everyone who responded. I really appreciate the advice and comments.

fortomorrow wrote:I I finally got my CPAP machine two days ago, and unfortunately, after being so excited to get it and hoping finally get some sleep, it's making me miserable.

I had no choice in mask or machine, these were the ones prescribed to me. I would have chosen nasal pillows or cannula over a mask, and I definitely would have got a data enabled machine. The machine is set to my pressure and supposedly cannot be changed (I know this to be false, I've found the instructions here, thanks!).

I rarely post on the board. I'm mostly a reader/lurker but I do feel your pain. One thing that I wanted to mention is have you spoken with someone about your mask? When I first picked up my machine, they had the same mask ordered for me, however, I told them that I would prefer to have something a little smaller that I can wear while watching TV in bed before going to sleep or while reading so I got the nasal swift which other than a little irritation around my ears, I really like. If you haven't maybe you should talk to them about the mask.

Also I do feel your pain. I had the hardest time adjusting to my CPAP machine. I can't tell you how many mornings had me waking up so tired I could barely function, however, now I really like using it. While then I would put off going to bed which didn't help becuase I wasn't getting enough hours of sleep, now I look forward to using it. I've even taken two trips to visit friends and have taken it with me.

As difficult as it is to do, keep with it and eventually you'll get use to it.

Sharon

fortomorrow wrote:UPDATE:

I just got off the phone with the RT manager at my local Apria. He's going to find my Rx and see if my doctor specified a machine and mask. If not, he is going to trade me out for an APAP or at the very least, a machine with a smart card. He will also take my old evil mask and give me the Swift nasal pillows. He was VERY helpful and kind, which I did not expect.

HOWEVER, I have a very bad feeling that my doctor (who is a control freak) wrote a specific machine and mask on my Rx, in which case I am going to have to fight with him.

And then I'll probably have to get a new doctor.

Again, thank you to everyone who responded. I really appreciate the advice and comments.

Good I'm glad. Ignore my last message.

fortomorrow wrote:UPDATE:

I just got off the phone with the RT manager at my local Apria. He's going to find my Rx and see if my doctor specified a machine and mask. If not, he is going to trade me out for an APAP or at the very least, a machine with a smart card. He will also take my old evil mask and give me the Swift nasal pillows. He was VERY helpful and kind, which I did not expect.

HOWEVER, I have a very bad feeling that my doctor (who is a control freak) wrote a specific machine and mask on my Rx, in which case I am going to have to fight with him.

And then I'll probably have to get a new doctor.

Again, thank you to everyone who responded. I really appreciate the advice and comments.

Just a word of caution.......even the Plus model has a smart card.......but is not data-capable.

Make sure that the machine is at least the M Series "Pro" (CPAP, but is data capable).......or better yet, the Auto w/A-Flex.

Den

Wulfman wrote:Just a word of caution.......even the Plus model has a smart card.......but is not data-capable.

Make sure that the machine is at least the M Series "Pro" (CPAP, but is data capable).......or better yet, the Auto w/A-Flex.

Yes I noted that earlier.

Unfortunately, the nice man at Apria isn't able to change my machine OR mask out without a new prescription, so I have put a call into my doctor asking for an Rx for nasal pillows and an APAP machine. I'm trying to justify the APAP rx with the reasoning that I'm having gastric bypass surgery in November and want something that will automatically adjust as I lose weight, as it would be a waste of everyone's time for me to keep having to go in for a sleep study.

Fingers crossed that it works.

Justification? It's YOUR therapy and YOU want a machine with the most options available. The insurance is billed the same amount for either machine (only one billing code for CPAP).......so you might as well get your money's worth.

Den