newbie to everything, help, questions

Hello everyone,

I have been reading and trying to wade through info on here but I feel very overwhelmed. There is just so much to learn.

Here is my situation...

I just had 2 sleep studies done. One to determine that I have severe sleep apnea and the other to use the cpap and mask. I haven't had my consult with the doctor yet to get all the info. I just had a short phone call from him telling me I was severe and needed to come in for the second sleep study. Neither sleep study went well in my opinion. But they said they got the 6 hrs. that they needed. I felt like I slept hardly at all.

When I used the mask (I'm not sure which one I used but it looked like a standard nasal with headgear (like mirage I guess). I had a full blown panic attack at first and felt like I couldn't breathe. Once I calmed down I was able to breathe but with great effort. Then they turned out the lights, another panic attack. Apparently I'm claustrophobic. Who knew? But after a few minutes of me focusing on breathing I was moderately ok. I woke up twice ripping the mask off my face along with all the electrodes on my face.

My consult with doc is in 2 weeks. I've been researching to try to be able to tell him what I need so I'm not just settling for what he thinks I need. I think I've determined I'd like to try the oracle. I have chronic sinusitis and allergies. Breathing through my nose is never really easy for me. But I think a full face mask will take my claustrophobia to a new level. Plus, I've had stuff in my mouth (metal, plastic, silicone) most of my life from the orthodontist, so I'm used to that. I've read that I'll have to have the humidifier up all the way. So I need a machine with a big section for water. Which is the best cpap/apap/bipap (I don't know the difference and I'm so confused) for me. I don't want them to give me the cheapest, loudest piece of garbage that my insurance wants to pay for. I want to be armed with knowledge to say "No, I want this".

I've also read that I want exhale relief. I think that is important cause I felt like I was drowning in air (if that makes sense). But I'm sure that they used a machine with that so maybe my pressure was too high?

What the heck is data capable? I have read that I want this but...which ones are data capable? How do I check the data, or does my Dr. do that?

I'm so sorry for the newbie questions. I'm just so confused. And considering how my second sleep study went I'd rather throw myself off a bridge than use a mask the rest of my life. It was AWFUL! I'm feeling very depressed and defeated but...I have to try, for my family and myself. Health benefits aside, I have to get my poor husband off the couch and back in bed. It's this or buy a bigger house to accommodate us sleeping separately. And...I'm not opposed to surgery but I'd really like that to be a last resort.

Any help you can give me or specific links you can direct me to would be great. I'm still reading and reading but running out of time before my consult.

Thanks,
Laura

Start with my blogpost "What you need to know BEFORE you meet your DME". The machines are out of date, but the rest of the info is good.

You cannot get adequate therapy if you breathe through your mouth in a nasal mask. The air pressure goes right out. So you are either going to have to work on not mouth breathing or on your claustrophobia. People who need a FF mask are liking the Amara View because it doesn't obstruct your vision. (I have no experience with it). When you get your set up we can help you work through your claustrophobia. I'd start with a FF mask unless you're certain you can reliably breathe only through your nose (address your congestion and start practicing now).

As for the machine you need a fully data capable APAP if possible. They all have some form of pressure relief these days. The two best machines are the ResMed Airsense Auto and the Respironics DreamStation Auto. Ask your doctor to specify in your prescription.

laurag,

Welcome to the forum.

laurag wrote: When I used the mask (I'm not sure which one I used but it looked like a standard nasal with headgear (like mirage I guess). I had a full blown panic attack at first and felt like I couldn't breathe.
...
I've also read that I want exhale relief. I think that is important cause I felt like I was drowning in air (if that makes sense). But I'm sure that they used a machine with that so maybe my pressure was too high?

Yes, the feeling of "drowning in air" makes perfect sense to me since I went through that, even at a relatively low pressure of 9cm with EPR set at 3 when I was first starting out.

And you are right, if you feel like you cannot breath because there's too much air coming in through the mask to exhale comfortably and fully, then exhalation relief is critically important. It's also important to note that this sensation can happen at even relatively low pressures, although most people around here tend to have the opposite feeling at low pressures.

When you talk with your doctor, you should mention that you were having trouble exhaling against the air pressure and that created the sensation of "drowning in air". Or you may want to use the phrase, "Forced to breath in more air that was comfortable."

Panic attacks also lead to a feeling of "can't breathe". Have you had panic attacks before? If so, do you know what tends to trigger them? And are you on any medication for them? If they've been a problem for you in the past, you may need to work with somebody to keep the panic attacks under control when trying to adjust to CPAP.

My consult with doc is in 2 weeks. I've been researching to try to be able to tell him what I need so I'm not just settling for what he thinks I need. I think I've determined I'd like to try the oracle.

Most sleep docs are willing to write the script as "mask of patient's choice". If that's how the script reads, then you can pick any mask you want. And you can change masks each time you order a new one.

I've read that I'll have to have the humidifier up all the way. So I need a machine with a big section for water.

Maybe, maybe not.

Humidity is a funny thing. Some people have more problems with nasal congestion when the humidifier is cranked all the way up. Some people have more problems with nasal congestion if the humidifier is set to anything other than the max setting. There's just no way to tell in advance.

One hint that typically indicates which group you're most likely in is to ask yourself how your nose reacts to a nice, hot steamy shower. If that clears your congestion, then chances are your nose will like a lot of humidity. If a hot shower leaves you more congested, then chances are your nose won't want a lot of extra humidity.

Which is the best cpap/apap/bipap (I don't know the difference and I'm so confused) for me. I don't want them to give me the cheapest, loudest piece of garbage that my insurance wants to pay for. I want to be armed with knowledge to say "No, I want this".

Unless you were titrated on a bilevel machine, the script will be written for CPAP/APAP. A script that says, "CPAP @n cm" is enough for a DME to legally sell you an APAP. So the question is can you find a DME that will sell you an APAP instead of the cheapest CPAP out there.

Here's the thing you need to know: The insurance company will pay a set amount of $$ for the machine regardless of which machine the DME actually sells you. The reimbursement to the DME for the machine is likely to be more than enough to cover the (OOP) cost of a brand new Resmed AirSense 10 AutoSet for Her, which is the most expensive APAP on the market right now. The DME, however, is under no obligation to sell you the Resmed AirSense 10 AutoSet for Her. And it is in the DME's financial interest to sell you the cheapest CPAP they can get you to accept. Many DMEs will claim (incorrectly) that your insurance won't pay for an APAP unless the script specifically calls for an APAP running in Auto mode. Many DMEs will claim (incorrectly) that your insurance won't pay for a CPAP that records full efficacy data unless the script specifies a full efficacy data machine. The DME is just trying to make as much profit as they can: By selling you a plain CPAP that does not record full efficacy data instead of an APAP, they're making several hundred dollars more in profit since they get paid the same amount of money from the insurance company.

What the heck is data capable? I have read that I want this but...which ones are data capable?

The DME will claim all the CPAPs are data capable because they've all got an SD card and a modem for wirelessly transferring data. But the low end CPAPs (which are called "bricks" around here) do not record full efficacy data. Some bricks only record the usage data---i.e. they record how long you use the machine each night and nothing else. This is the data that the DME cares the most about: If you don't use the machine, your insurance company won't pay for it. Some bricks record some summary data as well as usage data---i.e. they'll record an overall AHI for the night or some summary leak data, but they won't record the detailed daily data that a full efficacy data machine records.

What we at cpaptalk mean by a data capable machine is a machine that records full efficacy data. That means the machine is capable of recording every breath you take all night long. It records every event (apnea or hypopnea) that occurs during the night. It records flow limitations and snoring. It may attempt to record RERAs (respiratory effort related arousals). It records full leak data, not just summary leak data. In other words, it records every bit of data that can be useful if/when you run into problems with getting your therapy optimized.

How do I check the data, or does my Dr. do that?

If you wind up with a modern, full efficacy data machine, you will be able to track your own data using SleepyHead, a piece of software that has been written by JediMark, a member of the forum. SleepyHead is very high quality and it shows as much or more data than the professional software written by the machines' manufacturers.

Whether your docwill or will not check your data depends on the doc. Some do, most do not. Or rather, they check on the usage data, but not much more. Some of them will look at detailed data reports brought in by their patients. Some will look at data if/when a patient runs into real problems trying to adjust to CPAP therapy.

Which is the best cpap/apap/bipap

Most people around here would say that you should try to get a Resmed AirSense 10 AutoSet for Her or a PR DreamStation Auto CPAP.

If you continue to have serious problems exhaling against the pressure even with exhalation relief turned on, you should bring that up with the sleep doc. Sometimes that's enough to warrant bringing you back in for a bi-level titration study. Should you be moved to bi-level at some point in the future, both Resmed and PR make high quality bilevel machines. Both of their bilevels record full efficacy data.

I'm just 3 months in myself, and yes, it is very overwhelming at first. Right now, you are probably feeling information overload, getting so much information that it feels like its impossible to make any informed decisions. It may feel that way for a bit, but as each piece of the puzzle snaps into place it will start to make sense and feel comfortable.

The Amara View is a nice full-face mask. It doesn't touch your forehead or the bridge of your nose. Try to wear it (or whichever mask you get) while you are awake for an hour or more each day - with the lights on! - to get comfortable wearing it.

Make sure you get a data-capable machine even if you don't know now what that means. The nice people here will explain it to you when you're ready for that.

it would help if you didn't bury your questions in a wall of text... I did pick out a couple..

laurag wrote:What the heck is data capable? I have read that I want this but...which ones are data capable? How do I check the data, or does my Dr. do that?

here's a list of machines https://sleep.tnet.com/equipment/cpapmachines Janknitz blog is an excellent thing you NEED to read to make sense of a lot of this. data's usually on an sd card... many doctors, unfortunately, don't care if your therapy is working enough to check the data.

Everyone- Thank you so much! I feel much better now. I have a better grip on things and I have links to check out. I appreciate all of you pointing me in the right direction.

robysue- You really helped me a ton! Thank you for taking the time to type so much to help me. I can't tell you how much better I feel.

Well...back to reading