Apnea, CPAP, & Frustration

OK… the story so far…

I went to the sleep clinic after the recommendation from my doctor and prodding from my wife. The overnight with the wires hooked up and everything resulted in a diagnosis of severe sleep apnea with over 45+ events per hour. So far so good.

The second night at the clinic was indicated for a “trial” of the machine and mask. The mask I was fitted with was a nose pillow type (I don’t remember the exact make or model). I don’t remember the make or model of the trial CPAP machine either, I was a real newbie. The technician had me try it on for 20 minutes or so and my sinus trouble flared up. He said, “OK, we’ll try without the humidity.”

When it became sleepy time, the technician hooked everything up and said nighty-night. Little did I know what I was in for.

The sleep study went poorly to say the least. After two and a half hours I woke up gasping for air! My lips, mouth, and throat were parched. I could feel the desert-like dryness all the way into my chest, and it really hurt! I was grabbing at the mask in an attempt to remove it when the tech came in and helped me. He said that I should try to relax and that he would be right back with another mask. He never came back into the room and I spent the remainder of the night awake, waiting for him.

A month later my doctor asked about the sleep study. I told him of the experience and he said that he had never received the results. After a few phone calls from my doctor, the sleep clinic called me and asked me to return for the consultation. The doctor at the sleep clinic went over the results as though nothing unusual had happened and wrote the prescription for a machine and mask. I was in a room being fitted within minutes. He had prescribed a REMstar Auto with C-Flex, REMstar Heated Humidifier and an Ultra Mirage Full Face Mask.

At home, I have tried to use this equipment. They told me that because the study was not completed and they did not have a setting for the machine customized for me, that I should use it in “auto” mode. This has been a real lesson in frustration management.

I cannot sleep with this thing on my face! It is very difficult to breathe. I have spent three or four nights without sleeping because I cannot get used to the feeling of the mask or the back-pressure of forcing my body to exhale. When I get close to falling asleep, I wake with a start because of the inability to breathe. This is worse than the apnea itself!

The frustration level has become overwhelming and I have all but given up on this idea. My wife has been supportive, but she is willing to concede failure also if it means that I can sleep again.

I have since found this forum and I am now asking you for your opinions in the situation.
Should I give up and return the whole thing?
Is it worth the frustration to keep trying?
Should I try to force the issue with the clinic for a complete (and paid for) study?
Do I need to just educate myself better and take matters into my own hands?

Drasher,

An APAP is set up with a minimum and maximum pressure. Do you know what your machine is set at?

I suspect that it is set at it's widest range of 4 - 20. Some people feel like they are not getting enough air at 4 and that might be part of your problem. Also, you should be using it in Auto C-Flex mode which will reduce the pressure on exhale, making it easier to breathe. I would also turn on the humidifier to the lowest setting of 1 unless your sinuses start to give you trouble again.

Once you get the initial stuff right, the next step is to get used to the mask. Let me emphasize here that none of us liked it but we all did it. For some of us it was easier than for others but we all made it through it.

And yes, if I paid for a sleep study I would demand a sleep study. I would also get the software and card reader and take control myself.

Jim

Drasher,

Should I give up and return the whole thing?

NO

Is it worth the frustration to keep trying?

YES

Should I try to force the issue with the clinic for a complete (and paid for) study?

Did or will they charge you for the second night (titration) that they failed to complete? If they do, then I would force the issue with Doctor, Insurance provider and sleep clinic.

Do I need to just educate myself better and take matters into my own hands?

YES and YES And now that you're here, you've taken a good step towards both.

There are lots of horror stories about the sleep clinics and DMEs that are told on these forums. Many similarities and some differences. I'm sorry to hear you had a bad experience with yours. If it were me, I'd be having a "chat" with the doctors and insurance provider about what did and didn't happen....especially if they're charging you for the titration that went badly. On the other hand, there are a growing number of people who receive an APAP to do an in-home titration to see what pressure you need. Make sure that they give you a humidifier (heated or otherwise) for your machine (if they haven't already). Hopefully your machine has some recording capabilities (smartcard or downloadable memory) so they can confirm what pressure you need. Finally, I would suggest contacting whomever gave you the machine and mask and express the problems you're having with them and ask for their help. Maybe you need a different mask or the pressure (and other) settings on the machine aren't set right.

Whatever you do.....DON'T give up on your therapy!
(and do lots of reading here)


Best wishes,

Den

I have since found this forum and I am now asking you for your opinions in the situation.
Should I give up and return the whole thing?
Is it worth the frustration to keep trying?
Should I try to force the issue with the clinic for a complete (and paid for) study?
Do I need to just educate myself better and take matters into my own hands?

1. No
2. Yes, but don't keep beating your head against the wall. With help from experienced users, figure out what is wrong and THEN keep trying!
3. Yes, they owe you the remainder of the study. As much as those studies cost, they shouldn't get away with such behavior. Also, INSIST on a different sleep technician.
4. Yes, yes

Comments:

The difficulty exhaling is common. I had a LOT of trouble with it at the sleep study. Cflex helps many people. I got a bilevel machine to help even more.

Full masks are very difficult for lots of people. I assume they gave it to you because you were sleeping with your mouth open (the reason it felt so bad). Do you think you can train yourself to keep it closed, or is mouth breathing usual for you? Lots of people are more comfortable with smaller mask, but only if they can keep their mouths closed.

The lack of air feeling probably means the lower pressure is too low for you. Make them fix it, or fix it yourself. I can't stand the pressure to be under about 6 for more than a tiny bit of time.

Do you know how to read the settings on the machine? If not, someone on the forum can tell you. That way you will know what the minimum and maximum settings are, since it appears that they didn't tell you your pressures.

Keep in touch. There is lots of help available from lots of experienced people.
Moogy

Should I give up and return the whole thing?

NO

Is it worth the frustration to keep trying?

Yes.

Should I try to force the issue with the clinic for a complete (and paid for) study?

I'm not so sure. My sleep study was disastrours, and the clinic sent me hore with an automatic machine, that was eventually used to decide on treatment pressure. Since you've had your basic diagnotic study, you might find self monitoring, with an automatic machine preferable.

Do I need to just educate myself better and take matters into my own hands?

Yes, and Yes. - there's lot of reading for you to do on this forum (blue book and red balloon above the message board) and elsewhere - faqs https://www.cpap.com hosts of this forum, and lots of info in http://www.talkaboutsleep.com. Some machines have software that you can use to monitor your treatment and its results. The one you were perscribed has it.

Shortness of breath, certainly in the beginning, can also be the result of your pressure going too high.

Masks are no fun - it took many of us a long time to get used to sleeping with a mask and machine, many trials to find a comfortable mask. But sleeping well, and how you eventually feel - well, that is a lot of fun, and worth it.

Go for it - and come here to ask quetions.

O.

Thanks Jim Eads, Moogy, Wulfman, and ozij for your replies, suggestions, and well wishes... you all have given me enough "boost" to get in there and try again!

Jim Eads wrote: An APAP is set up with a minimum and maximum pressure. Do you know what your machine is set at?

No, I don't know the current settings for the machine, but I can see that I need to investigate more and give it another go.

The instructions sent with the machine are not the best. I am somewhat confused by the set of instructions with the main machine and more instructions with the humidifier unit.

I need to find a resource (on the 'net) for detailed setup and usage instructions

Moogy wrote: Do you think you can train yourself to keep it [your mouth] closed, or is mouth breathing usual for you?

Do you know how to read the settings on the machine?

I am not a mouth breather while awake... I don't know what effect a nose only mask would have on that... I'd be willing to try.

OK, OK... the resounding YESes are pretty convincing... I'll get more experience and try some more.

OOPS!
That "Guest" post above should be attributed to me!

Please add my words of encouragement - I am 100% behind Den's comments (+ the others).

This is absolutely worth the effort.

Cheers

DSM

Every thing they have told you is true, I can only add one thing, as bad as you were treated, they gave you the best of equiptment, don't let them substute anything. If you get it set up and working for you you will be fine.

The sleep lab didn't treat me much better, but you have better equiptment, I came out ok too, just one step down. It's a lot of what you make it, you have to be more stubborn than the treatment. You can succeed, and you will. Jim