New and freaked out

Janine · Post by **Janine** » Sat Apr 07, 2007 7:12 pm

Hi!

I just started on cpap in Thursday, for a one month trial, and can see that it will be an adjustment. I have only worn it for about 2 hours, because I find the breathing out to be difficult. But I am afraid to sleep without it because of the apnea. LOL, I am feeling that rock and a hard place!

The machine I have and mask are the Sleepstyle 600 and flexifit 406 mask (over nose). The pressure is at 8, and I tried to ramp it to see if that would help but I didn't notice a difference.

Anyway, I see there is lots of info to read, and I appreciate how helpful people are. I am sure I will have some questions once I actually know something!

Off to read!

bdp522 · Post by **bdp522** » Sat Apr 07, 2007 8:06 pm

Welcome!

It is a bit hard to get used to all of this. Give it time. Try to relax(I know it's hard to do) and just breathe normally. Try wearing the mask and having the machine run while you are awake, like while watching TV. If you really can't get used to the pressure on exhale you may need a machine with c-flex or epr. These machines give a lower pressure for at least part of the exhale. Many find that once they get used to it they don't even notice the pressure after the first coupe of breaths.

Brenda

tangents · Post by **tangents** » Sat Apr 07, 2007 8:40 pm

Hi Janine,

You've come to the right place - tons of smart and caring people to answer any question you throw at them. I'm new myself - 4 weeks into treatment. I agree with Brenda that you should get used to exhaling against a pressure of 8 if you give yourself enough time., but don't beat yourself up if you can't. They have good machine choices out there to fit different people's needs. Be patient, but be diligent. If you have apnea, it's not really a choice, you need to sleep with the mask on. Welcome to the hose-heads!
Cathy

JeffH · Post by **JeffH** » Sat Apr 07, 2007 9:08 pm

If you keep it up you will get used to it. I promise. I have my APAP set between 11.5 and 14 and when I put the mask on and it runs at 11.5 I can hardly tell its on. If you keep it up you will get to that point yourself. The main thing is to relax and let it happen....like someone on this forum said, it's just air.

Good luck

JeffH

Inpjs · Post by **Inpjs** » Sun Apr 08, 2007 2:13 pm

Welcome! I am also new to Cpap, about 5 weeks now. You will get used to it, I promise. I have woken up a few times thinking it wasn't working but it was actually because I am getting used to it. At first it feels like too much air is coming in and you have a hard time breathing out but you do have to relaxe and try to breathe normally.

And you have come to the right place for advice. No one here is a medical doctor but they have experienced just about everything you and I are about too if we haven't yet. There are a lot of wonderful people on here!

Inpjs

bluegrassfan · Post by **bluegrassfan** » Sun Apr 08, 2007 5:09 pm

Like Brenda said, put the mask on and watch tv or read a book, or listen to some music...be careful, you might fall asleep..lol. My first post was just like yours, freaked out, couldn't breathe out, couldn't get enough air sometimes. And I'm still working thru problems, but lots of good folks on here who care about other people, and they will help you. You couldn't afford all the good advice you will receive...remember nobody is a doctor, it's just free advice...use it if you can. I will say, now I look forward to putting on the mask....this afternoon I took a nap with it, wore headphones with a CD of breaking surf from the Big Sur coastline in Calif...the exhaled air coming down on me felt like an ocean breeze...bob p.s. the name of the CD is Ocean Moods by Nature Recordings produced by World Disc Productions.

Janine · Post by **Janine** » Sun Apr 08, 2007 10:31 pm

Thank you so much! I feel much better knowing I am not crazy (or at least over this ) I did not wear it last night, but am going to get into bed earlier tonight and just read with it on. I am likely overthinking it and need to forget about it and let my body breathe!

I feel so much better. Thank you!!!

bdp522 · Post by **bdp522** » Mon Apr 09, 2007 4:22 am

Just keep at it. It may take a few nights before you can sleep with it on. You may find that you unknowingly remove the mask during the night. You may wake often with the mask on for a while. Don't worry, it takes time to get used to all of this. DO post back and let us know how your'e doing!

Brenda

SelfSeeker · Post by **SelfSeeker** » Mon Apr 09, 2007 6:28 am

Hi Janine,

I think breathing is like walking upstairs, if you think about it you will mess up.

I posted in the past that reading to relax with my APAP on helps with the breathing. If I listen to the machine, I cannot breathe right.

I like the use of CFlex to help breath out. At pressure of 11 or 12 I found it hard to breath out.

When going to bed, I hear the machine and listen to the breathing. When I wake up during the night, I do not hear it at all. I actually check to see if it is on. Of course it is on. So I know I am doing it right while sleeping.

Where you titrated in a lab to know your pressure was 8?

It is common to remove the mask at the beginning.

Picture yourself sleeping peacefully with your mask on. This is not a battle that the mask wins etc. The mask is your ally and constant sleeptime companion. Get the right mindset. I find this is half the battle.

If having the mask on freaks you out, or you are claustrophobic then look at different masks if you need to.

Lepeu63 · Post by **Lepeu63** » Mon Apr 09, 2007 1:47 pm

Hi Janine!

CFlex was the magic bullet for me. The exhalation even at the 'low' pressure of 8cm was causing me to have panic attacks as I drifted off to sleep. Had my RT turn the CFlex capabilities of my machine on and problem solved.

When is you next RT appointment?

Janine · Post by **Janine** » Mon Apr 09, 2007 2:58 pm

I never went to a sleep lab. I took an oximeter home and wore it one night, and based on that they said I have OSA. The RT set it to 8, saying I probably didn't need more. They let you have a machine and mask for a month on a trial basis. I tried on 3 masks on this one fit right.

Cflex sounds like it might be a good idea.

I have learned so much here! I have no idea what options they will give me for machines - I was given this one because I wanted humidified air.

I am going to call tomorrow and go in, now that I have a bit more of a clue what to ask and how I feel. Last night I tried for about an hour, but my ears hurt, more problems breathing out, and I breathe through my mouth normally at night, so the nasal mask isn't really helping. And I am getting over a sinus infection, which is probably making it all harder.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cflex

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cflex

Guest · Post by **Guest** » Mon Apr 09, 2007 3:14 pm

Janine wrote:I never went to a sleep lab. I took an oximeter home and wore it one night, and based on that they said I have OSA. The RT set it to 8, saying I probably didn't need more.

Janine, from all I've seen and read, this is completely inadequate. If you're going to be using a fixed pressure (i.e. CPAP), then you really need to have a professional titration (a.k.a. PSG, a.k.a. sleep study). Some RT looking at you and saying, "you probably just need 8" is ridiculous. It's far, far more complicated than that. Get a real sleep study for a proper titration, instead of merely a wild-assed, and usually worthless, guess from an RT.

Now, if this one-month trial will somehow lead to a real sleep study, then okay. But if it's a one-month trial which just converts into being a permanent rental or sale but with no sleep study titration involved, you may want to insist on being professionally titrated in a sleep study. I know I would. Otherwise, 8 is merely a random guess that may not be effective for you at all.

As for getting used to CPAP, you'll be fine. Eventually you don't even notice you're wearing it anymore, or even that it's operating. That's how used to it you get! Honestly. So stick with it, it'll get better.

Guest · Post by **Guest** » Mon Apr 09, 2007 3:16 pm

I breathe through my mouth normally at night, so the nasal mask isn't really helping.

I recommend a full-face mask for mouth breathers. The Fischer and Paykel HC431 is an excellent choice for this. Covers nose and mouth, so you can breathe freely and naturally.

The alternative is using a nasal interface like you're using now, and either holding your mouth closed with a big elastic strap tied around your head, or taping your mouth shut like a hostage. It makes much more sense to me (and many others) to merely include the mouth in the air delivery, instead.

Good luck!

Linda3032 · Post by **Linda3032** » Mon Apr 09, 2007 3:18 pm

Good Grief, where do I start?

Never titrated, and the tech "guessed" at your pressure.

Then the tech put you on a straight (not auto) cpap machine which doesn't have software to determine how you are doing - at the end of the month.

Plus, a cpap machine that has no exhale relief.

Hello? That whole scenario is just too incredible.

You need to have them set you up with an Auto machine APAP, with exhale relief. That would be an M Series Auto with Cflex. That is the only machine that will give you exhale relief in the auto mode. (If I am wrong here, someone will say so).

You will need to check the LCD every day and write down your data numbers. Your Tech (if we can call him that), would need to download the smartcard every 5 or 6 days to get "Full Detailed" reports to obtain further data that the LCD doesn't display.

If your ears are hurting at 8, have the Tech set your machine at 5 minimum to 8 maximum. Perhaps 8 won't hurt you with cflex and the fact that you won't be at 8 most of the night. But if 5 is too suffocating, then that has to be bumped up to 6.

After the weekly download of data, then the data needs to be looked at and a determination needs to be made for new pressures.

Again, good grief. And please tell me if this is a delayed April Fool's Joke.

Guest · Post by **Guest** » Mon Apr 09, 2007 3:33 pm

Your Tech (if we can call him that), would need to download the smartcard every 5 or 6 days to get "Full Detailed" reports to obtain further data that the LCD doesn't display.

Yeah right. The "tech" looked at her and decided she needed 8 cm of pressure. Does he sound like the kind of fellow who's going to be able to correctly interpret and analyze detailed sleep data coming off that smartcard?

I think she needs to see a real sleep *doctor* specializing in sleep medicine. And she needs to get a real sleep study titration. The current situation ("you look like an 8cm sort of gal to me!") is ludicrous. Janine, call them up and read them the riot act if you must, but fix this. Good luck!

Mask	Humidifier

Additional Comments: Equipment isn't correct, S9 ASV w/H5i