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Re: Just another "newbie", feeling like I'm suffocating...
Posted: Wed Nov 16, 2011 8:02 am
by Pugsy
Lizistired wrote:The IQ is the new one that is only auto fro 30 days, right?
Yep. Unsure if the machine is set to auto for now doesn't sound like it. Even at a small range starting at 5 cm it won't help feeling suffocated at 5 cm since that is what is used to start with.
If it were me I could experiment with the machine and just try 6 or 7 cm pressure to ease my mind that it was just the pressure. I would do it while awake during the day. It would eliminate that question one way or another.
For some people 5 cm is simply not enough air movement to feel comfortable.
Re: Just another "newbie", feeling like I'm suffocating...
Posted: Wed Nov 16, 2011 11:17 am
by Java Time
Isme,
1) If you are getting great advice from your tech, you may not want to mention where that info is coming from when you talk to your doctor's office. Either you may get the tech in trouble or make the doctor think you are challenging him and then he may be less reasonable. I usually have pretty good luck just saying "I was wondering", "I read somewhere" or "I heard somewhere" and then whatever the question is.
I read on a "sleep tech" forum a good comment. The sleep tech said "I don't argue with the doctor or give any info that could disagree with the doctor. If I am correct, it makes the doctor look bad. If I am incorrect, it makes the doctor look bad that they sent the patient to a clinic that gives bad advice."
So my point is, if a tech is willing to tell you good advice, protect their identity when talking to the doctor.
I also have found it can be really effective to call and ask my questions to the nurse (not receptionist). Frequently the nurse actually knows more about patient care than the doctor. Not just for sleep issues, I find this all the time. The doctor prescribes, but the nurses tend to answer most of the questions after the fact and they have more practical experience.
2) You may have a lack of mask choices if your doctor has truly locked you up on the nasal "pillows" per prescription. Ask for a copy of the prescription and see if the nasal pillows are really specified per Rx. If the pillows are not specified on the Rx, I believe you can insist to your DME on trying a different mask.
If the doc specifically prescribed the nasal pillows (not just verbally told the tech), I think you need to call the office again and talk to the nurse again and ask if they will PLEASE change the prescription to allow you to try a different mask until you have your 30 day checkup and can get specific recommendations from your doctor. If the nurse tells you no, tell her you are very concerned because you cannot breathe.
If this gets you nowhere, go in person if possible to your local DME and ask who the doctors are in your area that refer people to the DME. Then ask if they can recommend a couple docs that patients seem to like. In person, the DME may be willing to tell you this info, but they may not for fear it will get back to your doctor.
3) I'm still fairly new myself and have not dialed in the options, but I have had some of the same issues as you.
I started with a minimum pressure of 8 and max of 20. First two nights I slept great because I was SO tired from prior apnea-induced lack of sleep. By the third night I was rested enough to start having problems from my nasal pillows feeling like I wasn't getting enough air. I ended up going up a nasal pillow size as you mentioned, which helped.
I still wasn't sleeping well though and I called my insurance and explained the situation. I told the insurance I felt like I could not breathe with the current mask and wanted to try a different one. The insurance said that since it was a "medical necessity" that I use the CPAP machine, the insurance would authorize a different mask. I then called the DME and told them "I feel like I can't breathe with this mask" and that my insurance said I could get a different mask. I did NOT discuss this with my doctor or require his authorization per the DME to change masks, but my prescription did not specify the mask type. The DME got me in within a day or two (normally it seems to take 2 weeks to get an appt). I left the DME with a nasal mask which helped me a lot.
At my 30 day checkup, my doctor bumped my minimum pressure up +2 to a new minimum of 10. Starting that first night on the higher minimum pressure, I went back to the nasal pillows as it seemed like I now have enough air flow to fall asleep without feeling like I am suffocating in the pillows. I've read from some other people that they also need a little more minimum pressure with nasal pillows to feel they are getting enough air flow. It may be psychological, but the lower minimum pressure kept me awake and/or woke me up. With the higher minimum pressure the problem went away.
Hope this helps and don't give up.
Re: Just another "newbie", feeling like I'm suffocating...
Posted: Wed Nov 16, 2011 1:25 pm
by kteague
Java Time wrote: ...1) If you are getting great advice from your tech, you may not want to mention where that info is coming from when you talk to your doctor's office. Either you may get the tech in trouble or make the doctor think you are challenging him and then he may be less reasonable...
I like your advice. If a tech goes out on a limb and talks to you, it seems a betrayal to reveal the source. Not to mention, it's not a good idea to alienate allies.
Re: Just another "newbie", feeling like I'm suffocating...
Posted: Wed Nov 16, 2011 10:01 pm
by sheep1234
Hello isme,
I can't believe your pressure is 5!! Seems really low to me.
When I first started my cpap therapy, my ramp started at 4.5 and sloooooowly went to 9.0. I felt like I couldn't get enough air but I thought that this was "just the way it is" and just tried to breathe slowly and deeply through it. After a little while, I figured out how to access the settings for my machine (found on this forum somewhere!) and turned off the ramp feature. Now, I hit the button to start the "warming humidifier" and put my mask on, get comfy...Then I push the on button and voila! I go to 9.0 directly and fall asleep. Who wants to start out trying to go to sleep while wondering, "Should I pull my mask off now?! Well, I'll just wait a lil bit longer....I can do this! Man! I wish I could breathe!!" Not very soothing going-to-bed thoughts!
My EPR setting is also set at 3 which is the setting that is supposed to be the "easiest" for breathing against the air being forced into your nose. I moved my 9.0 up to 9.2 one time but found 9.0 to be better for me.
One last thing, I've tried the FX mask and I hated it. I have the LT version and love it! The FX leaked everytime I moved. The LT has the capability to "ratchet" up and down so you can angle the pillows more comfortably into your nostrils. You can find videos on youtube.com, if you are curious.
Good luck! Let us know how things go.
Re: Just another "newbie", feeling like I'm suffocating...
Posted: Thu Jul 10, 2014 3:27 pm
by BuddhaCat
Isme, I'm totally new to this board (just joined today and got some great advice) and new to CPAP. This is my 9th or 10th night. I'd love to follow your progress and maybe you can follow mine and we'll see if we can make it through this together!
We're lucky to have found this board . . . the people are amazing.