Hello - I'm Kona...

kona0197 · Post by **kona0197** » Fri Oct 12, 2007 2:09 am

And I am happy to be among others that have the same problem as I do. I have been struggling these last three night to get used to the machine but I just can't do it. It feels like I'm drowning so I end up breathing through my mouth. I guess I need a full face mask.

Any suggestions?

Snoredog · Post by **Snoredog** » Fri Oct 12, 2007 2:16 am

if your mask is too small it can put too much pressure on the outside of your nose and lead to congestion.

You might try taking a shower the steam can help relieve congestion. Don't turn your humidifier up too high, that adds too much moisture and it can cause you to become congested, just like walking into a very humid room.

The purpose of the humidifier is to add moisture to the air not actually warm the incoming air. So if you turn up the humidifier too much water droplets will form in the hose and mask (called rainout), then those droplets hit your face while under pressure it can wake you up.

You can check to see if the mask pressure is contributing to nasal congestion by pushing with your fingers around the base of the nose. If that happens try a saline solution and consider investing into a box of BreatheRight strips, they help a lot, you wear those under your mask, at Costco they are about $10 bucks a box for 38 ea.

You can also make your own saline rhino rinse and it will offer immediate relief:

kona0197 · Post by **kona0197** » Fri Oct 12, 2007 2:34 am

Thank you. I don't think the mask is too small it fits fine. It's just hard to breathe even on ramp. anyhow on payday I'll pick up some breath right strips. Thanks again.

Julie · Post by **Julie** » Fri Oct 12, 2007 3:44 am

Your pressure may be set too low, or you may be trying to start out with the setting via the ramp feature set to take too long to get up to the pressure you need. If you know what the prescribed number actually is, maybe you should set the machine to but turn off the ramp feature entirely.
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CPAPopedia Keywords Contained In This Post (Click For Definition): Ramp, auto

kteague · Post by **kteague** » Fri Oct 12, 2007 3:58 am

Hi. Too bad your intro to cpapland is off to a rough start, but it is not uncommon. In trying to help pinpoint the problem, a few questions:

What is your titrated pressure and the pressure setting of your ramp? When my ramp was at 4 I couldn't tolerate it and took the mask off minutes after putting it on. How long of a time is your ramp set for, and hoe far into each session do experience trouble? When my pressure was at 10 I felt like I was suffocating because I was still having apneas.

Are you using the word drowning as equal to suffocating or because of water in your face? Solutions to rainout are different from being able to breathe.

If you have nasal congestion making air intake compromised, that can lead to a sense of suffocation, as can having a deviated septum or anything that prevents the air from flowing freely when blown thru the nose. Mouth breathers sometimes mouth breath out of necessity. Determine if your resorting to breathing thru your mouth is a response to air being unable to enter freely thru your nose, and whether the cause is treatable, or if it's actually a pressure issue. You may be one who really should just get a full face mask. I think I would want to methodically figure out the whys before doing a lot of changes.

Please pursue finding out how to make this work for you. You weren't given this machine without cause. Again, welcome.

Kathy

sharon1965 · Post by **sharon1965** » Fri Oct 12, 2007 6:55 am

hi kona
you say it's hard to breathe "even with the ramp on" but it may because of the ramp; with a pressure of 7 you probably don't need the ramp on...i felt like i was starving for air when used the ramp at the beginning of my therapy...

a lot of folks here use the full face mask with great success and comfort...there are various types of ff though and some very loyal users of some of them...but if a ff isn't the way you want to go right away, you could try some of the fixes people employ to be able to stick with nasal masks or nasal pillows

snoredog's suggestion of keeping your nasal passages clear is a good one...i use the NeilMed Sinus Rinse kit because i'm not as motivated as he is and i'm too lazy to make my own; i also had the surgery to repair a deviated septum, as kteague mentions, so i can breathe freely on and off cpap

i also found heated humidity contributed to my congestion; many people find they have to have the hh all the way up to the highest, some lower and some, like me, use it as a passover to moisten the air without heating it...it varies person to person

it's early days for you, and many, many people feel like they can't manage xpap at first--most of us have been in your place at one time or another, but there are lots of suggestions and lots of generous people here who will weigh in with ideas...try to be specific about issues as they present themselves and you are sure to receive help with them

best of luck and welcome to the boards
sharon

Lepeu63 · Post by **Lepeu63** » Fri Oct 12, 2007 7:11 am

Hi Kona and welcome!

If your machine has an exhalation relief feature turn it on or have your RT do so. That was the big difference for me!

I'm at 8.5 and I find with the ramp I don't get enough air. If you get the exhalation relief you might find you don't need to ramp.

kona0197 · Post by **kona0197** » Fri Oct 12, 2007 9:27 pm

Before I answer everyone's questions I must level with everyone here. I know I have sleep apnea - there is doubt about that.

the thing is is that I haven't had a sleep study done. I haven't been prescibed this machine. It was given to me by a loving mother.

You may direct me to getr a study or presciption done and over with but I have no health coverage and we are very poor.

I thought you all should know. I will answer everyone's questions tomorrow.

Thanks!

kteague · Post by **kteague** » Fri Oct 12, 2007 10:48 pm

Kona, thanks for sharing your circumstances. It does explain some things. If your mother has sleep apnea she is probably well tuned in to these things and eager to see you get the help you need. Sure hope she has a spare machine while you're trying to figure this out.

It is going to be challenging to figure out the pressure you need, but not impossible. You'll have to tweak it until you you feel better and/or an observer doesn't see/hear you stop breathing any longer at a certain pressure. I see your ramp is set at 4 - for me that was suffocating.

It would be easier to titrate yourself if you had an auto machine that would find the pressure you need, or at least a cpap that gives you data to see if it is working. Do you know anyone else being treated for sleep apnea that might have one they could loan you for a few nights just to determine your pressure?

Without knowing the particulars of your situation, do you have a doctor or can you go to a public clinic doctor and ask them to order you a trial on an autopap for a limited time? That would be a fraction of the cost of a study, though still some expense involved unless your doc can call up a favor and make it happen for you. Or you could buy a used machine from an individual or cpapauction at a fraction of the cost.

If you were Medicaid eligible this would all be covered.

Good luck with sorting thru all this.

Kathy

ozij · Post by **ozij** » Sat Oct 13, 2007 12:41 am

The machine you indicate has a single pressure, and does not even hint at the breathing events.

It may be set at pressure that was good for your mom, or the person she bought it from, and was not good for you.

Here's what I'ld do if I were in your circumstances:

I'ld set the machine at a pressure that was low enough for me to feel comfortable with, and sleep with it like that for about a week.

Then, if I felt dramatically better (slept well, was rested), I'ld leave it like that. if I didn't, I'ld raise the pressure just a little - 0.5 cms/h2o if the machine lets me, or 1 if it doesn't.

Sleep like that for a week, see how I feel, etc. If you can't find pressure that lets you fall asleep, and sleep well, you'll have to start using the ramp option - which lets you fall asleep at lower pressure.

The better way of going about it - though I realize this might be impossible for you - is to see if you can have your pcp give you an Rx for a machine without a PSG and the order a data capable non-automatic machine online. That would be cheaper than an auto, and both Respironics and Resmed have machine that report the breathing events on a small screen - so you can self titrate without software.

I do realize this might not be possible for you - but if there is any way you can do that, it would make finding the right pressure much easier.

Good luck and keep us posted.

O.

DreamDiver · Post by **DreamDiver** » Sat Oct 13, 2007 3:31 am

kona0197,

I have a setting of seven, and I generally don't use the ramp. However, my DME was kind enough to point out to me that it can be set to a higher beginning setting. I was not comfortable at a beginning setting of four and upped it to five, just in case I wanted to try it. (I haven't needed to.) But at four, I felt like I was stifling. There may be a way to set the low-end of the ramp setting on your machine, but I'd just try it without any ramp.

Good luck.

rested gal · Post by **rested gal** » Sat Oct 13, 2007 6:17 am

kona0197 wrote:the thing is is that I haven't had a sleep study done. I haven't been prescibed this machine. It was given to me by a loving mother.

Same kind of start for me. No sleep study, no insurance. Borrowed an old cpap from a friend in town. Had to guess at what the pressure was while I fiddled with a tiny screw in the back of the machine...that's how old THAT machine was. LOL! You'll hear no criticism from me for doing what you have to do to take care of yourself.

And as you see from the other replies, people on this board are very understanding and will help in every way they can.

Since your machine does not record any AHI data to help you make pressure changing decisions, what ozij suggested is probably as good a way as any for you to work on arriving at a pressure that will be effective for you.

Statistically, a pressure of 10 keeps most people's airway open. So, you might want to start at 7 or 8 and see how it goes.

Good luck, and please do let us know how you're doing.

I guess you know how to get into the therapy setup menu on your machine, right? If you don't have the "Provider SetUp Instructions" booklet, PM me your email address (use the "PM Me" button at the bottom of my post here) and I'll be glad to send you a PDF of it.

j.a.taylor · Post by **j.a.taylor** » Sat Oct 13, 2007 10:41 am

rested gal wrote:
kona0197 wrote:the thing is is that I haven't had a sleep study done. I haven't been prescibed this machine. It was given to me by a loving mother.
Same kind of start for me. No sleep study, no insurance. Borrowed an old cpap from a friend in town. Had to guess at what the pressure was while I fiddled with a tiny screw in the back of the machine...that's how old THAT machine was. LOL! You'll hear no criticism from me for doing what you have to do to take care of yourself.

Kona,

There's a lot of good support on this forum, and Rested Gal and Snoredog offer some of the best suggestions for making this therapy work. I'd encourage you to check out some of their previous replies to others. You'll end up with an unofficial Master's Degree in Sleep Therapy.

Rested Gal,

You gave me a good laugh. The thought of you turning a screw to adjust your pressure. Gives new meaning to the phrase, "Might be a screw loose somewhere."

That machine must have been around when dinosaurs roamed the earth.

WearyOne · Post by **WearyOne** » Sat Oct 13, 2007 11:24 am

Hi Kona!

First of all, I used the ramp for about a month and then stopped because I felt I did better without it. And the lowest number I could START the ramp at was 6.5. Any lower starting number and I felt like I was suffocating.

Also, I use the Hybrid mask, which covers your mouth and has pillows for your nose. I have no problems with this mask (or the UMFF) when I put it on as far as getting used to the air pressure, but when I put on any nose-only mask, I start to panic! I can't stand not being able to open my mouth (maybe because I can't keep it shut when I'm awake ).

So, the first thing I would do is either not use the ramp, since your pressure is only 7, or move it higher than the 4.

Pam

kona0197 · Post by **kona0197** » Sat Oct 13, 2007 9:55 pm

I tried again a few nights ago. Honestly I am so busy it's almost impossible to even try to use the machine. As we speak the machine sits in a pile on the floor awaiting to be put up. The thing scares me.

To tell everyone the truth I really need a full facial mask. No one happens to have one they could part with do they?

Thanks everyone for your helpfullness and responses.

Hello - I'm Kona...

Hello - I'm Kona...

Trouble breathing

Non Prescribed Treatment

Ramp Settings

Mask