First night

[davjan4]

I had a fitting session today at the sleep center. It was quite a shock. The tech had to turn the apap down as far as it would go (4) so I could tolerate it. It's supposed to increase over 20 minutes or so, but my problem is my apnea tends to happen upon onset of sleep, so if it's at a 4, I can't see where it would be effective at all.
She tried a full face mask first, then a nose one. The nose one was better. The full mask blew a lot of air into my stomach. I only had the nose mask one for like 5 min, but it seemed like it was blowing air down my stomach and was inflating my eustation (sp?) tubes. I felt bloated almost immediatly. I felt like I was going up in a airliner, (the pressure in my ears contributing to this). I had a KILLER headache in about 2 minutes.
I'm a little disapointed in how uncomforatble the air was. I thought it was the mask that I would have the problem with, but its the pressure.
The nose mask does not hold my mouth closed in any way. The tech told me to hold my teeth closed and put my tongue up aganst the top of my mouth. How do I maintain my moth closed and my tongue opn top of the roof of my mouth if I'm asleep??
Needless to say I'm not impressed. Even the tech said, "maybe you should consider surgical options".
With my onset type apnea, I don't know how this is going to work. Someone say something to encourage me.

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

[ozij]

I can relate to the feeling that anything higher than 5 is too much - that's how I felt when I started.

And I know it sounds almost incredible - but you do get used to the pressure. Just take your time - the techs have to try to find out the pressure where your apneas disappear - but once they've found it, ask your doc about starting out at a lower pressure and raising it gradually. For some of us, its like weight lifting - we need to load our breathing muscles gradually.

Breathing with pressure coming in takes getting used to - and when you're frightened by the incoming air (I was) or by the possibility that the pressure will become too high - your breathing becomes a real mess.

Start out where you're comfortable - or relatively comfortable. Make sure that the upper range in something you can tolerate - and then try to breathe and relax. Some people watch TV or read - I couldn't I"m too shrot sighted without my glasses - just do anything you can to make sure you're setting up a friendly relationship with that machine.

Easy does it.
O.

[Vettecraze]

Don't loose your faith, there are a few options; if you can't adapt to your prescribed pressure you can ask you DME to try a machine with an exhalition relief feathure such as c-flex, a-flex or epr. If none of those options work for you, you might be a candidate for bi-pap. Also, I don't know if an auto could fix your problem but it might work, since the pressure would remain low untill you have an event. An auto bi-pap would probably be the holy grail in your case. Good luck in finding a solution.

Ernesto

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CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, DME, auto

[rested gal]

davjan, bless your heart. It's all going to get better. Promise.

I went to your Profile to look up some of your previous posts. Started with this one:

viewtopic.php?p=198548

As for the fitting session you had today, the tech was probably well-meaning and was trying.... but you were right (imho) to be unimpressed by her advice.

Most of the time the problems people have dealing with pressure is from trying to breathe out against pressure. When inhaling, the pressure is not usually the real problem, imho. It's trying to breathe out against the resistance you feel that might be the real problem for you.

There are several Respironics machines would probably give you a much better chance at becoming comfortable breathing out against pressure than straight cpap (even cpap with C-Flex or EPR) would:

bipap with bi-flex
bipap auto with bi-flex
auto with A-Flex

As you mentioned, if you don't wear a FF (Full Face) mask to cover your mouth and nose together and let you breathe either way, through nose or mouth, the air gushing out your mouth or attempts to breathe in through your mouth while wearing a regular nasal mask or a nasal pillows mask is going to wreck your treatment.

With my onset type apnea

You might have missed ozij's reply in the other topic you posted in...the thread I linked to above.

Sleep onset central apneas are normal, if those are what you're having. If it's obstructives hitting you almost immediately when you start drifting off to sleep, effective cpap/autopap/bipap treatment right from the get-go can prevent those.

For now, though, while you're having trouble dealing with pressure, it's going to be a trade-off of using enough pressure to handle any immediate obstructives yet be a pressure you can handle. Gonna have to work on getting the right machine, right settings, right mask, right control of mouth leaks, etc., etc. Unfortunately, some medical professionals are not always good at helping you with all those things.

It's a puzzle to be worked on one step at a time, and it can be worked out.

Your experience is not unusual. It really will smooth out for you, especially if you can get one of those machines I mentioned -- to make exhaling easier.

Even the tech said, "maybe you should consider surgical options".

Just because the tech doesn't know how to help you get all the pieces of the puzzle in place doesn't mean it (cpap treatment) can't be done. Keep digging (as you've been doing) into this message board as if you were a med student studying for the exam of your life.

First assignment - talk to your doctor about prescribing one of those other machines for you.

Second - read all you can about the ways others deal with mouth leaks so they don't have to wear a Full Face mask unless they do like a FF mask:
Links to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

Third -
nah, that's enough reading for now.

Take two aspirin and call the doctor about those machines!

Do keep posting about the difficulties you're having. People on this board will help you all they can. Many have been through the same initial problems you described.

[davjan4]

Unfortunatly, the machine that is on loan to me IS an auto pap. The "4" setting that she started it out on was as low as it would go. Even though it will accomidate for events, I need it high to start with, since those onset apneas wake me up. I never really get to sleep. The doctor said I apparently have very light stage ones. What most sleep through in stage one (those pauses in breathing upon going to sleep) wake me. My sats don't go too low, usually in the high 80's (although I've had one go to 81 one time). I think my onset breathing apneas that you called "normal" are a little to long for me. I don't seem to start breating again, which is why I wake up gasping. I can't even take a nap. Seconds after starting to go to sleep, I stop breathing. The only way I can sleep is to exhaust myself, take a Sonota, stay up and read some more, then go to bed when I'm practically cross eyed. I do fall asleep almost immediatly though. I even sleep better. Until I strted that routine about 5 days ago, I don't really remember dreaming (due to never getting any REM sleep). Now I dreamn a lot and feel much better when I wake up, even though I don't fall asleep until 1:00AM and get up at 7:00.
I really want this thing to work... I will post and let you know how the first night went.

[amandalee]

You have the right attitude. I'm sure that with time, things will work out. Being a very impatient person myself, I realize that sounds hollow, but it's true.
I've been using straight CPAP for a week and a half, and the first few days were a total nightmare. But the nice folks on this board gave me some good advice and helped me make some adjustments to my machine, and things are slowly getting better.

First of all, some more details about what type of machine you have would be helpful. You said it's an auto, but does it have some kind of exhalation releif? (like C-Flex or A-Flex, as rested gal mentioned). Does the machine show you any data, like the number of apneas per hour or anything you could use to help determine how effective your treatment is?

Since you seem to be having alot of trouble using the machine, I think you should call your doctor and let them know, to find out if there's something they can do to help you.

Good luck, and I hope things get better soon.

[davjan4]

There is not exhalation releif on this machine. It's weird in that I only wore it for <5 min total and on the way to work it felt like it took more effort to breath, since the machine was putting air in me while it ws on.
It's 10:51 and I'm in that making myself tired process. The autopap is still in the car. I don't even anyone in the house to see it, or even know. The kids don't know. I have a really hard time accepting this... It's just really hard to accept being tied to a machine for the rest of my life. I'll post how it goes tonight.

[davjan4]

By the way I'm using a GoodNight 420e.

[AdmiralCougar]

Oh Davjan4 I hope it doesn't take to long to get used to the pressure. Good luck.

[Guest]

davjan4
I am using a Swift II (nose only) and have adjusted to keeping my mouth closed. The first or second night included some period of open mouth breathing and the sore throat the next day. I tried side sleeping with my fist under my chin to hold everything closed as I fell asleep. This worked and the conditioning has lead to about 33 days with no leak or mouth breathing problems. You can learn to keep your mouth closed while you sleep with some initial success. If that does not work, there are tape and chinstrap techniques other know more about and will help you adjust to. The human body is very adaptable. After breaking 7 ribs I discovered how to suppress sneezing ( with a very high level of negative feedback for each sneeze) and only sneezed twice after the initial experience. Sneezing was stopped for 4 months with very little additional conscience effort on my part. keep the faith, we are here to help. Rested Gal has helped many on this path. Once you hit some good nights of sleep and feel good the next day, you will not consider being hooked to a machine an issue. I'm hooked on autos, TVs and don't get me started on the kitchen and laundry room. A machine I use at night when no one is looking is nothing in the great scheme of things. This is the one machine that will keep the rest of them from getting you in trouble while your half asleep. Good luck and keep us posted.

[snoregirl]

It takes time to use the machine for some and for me the nasal mask was a challenge. I freaked the first time I tried one and the air went in the nose and shot out the mouth. I thought I would suffocate.

Don't clench your teeth or your teeth will hurt. You do need to keep the jaw up and the lips closed and tongue up.

Jaw can be accomplished with a three inch ace bandage or commercial chin strap. Wrap the bandage from under the chin over the crown of the head. Not too tight, just enough to support.

Lips are taped with gentle paper tape with the ends folded under.

Then try to place your tongue up on the roof of the mouth. This will block the air from going down your throat. Relax and practice when you are not tired. And start without the tape as you will be awake.

Once I got going with the nasal pillows and wasn't freaked out, I loved them.

I truly wonder if exhale relief would help at a pressure of 4. I don't remember seeing your titrated pressure. For that matter how did you survive your titration study with your issues? Think back about what you did and what mask you used etc and that may help too.

[davjan4]

Oddly enough, there was no titration study. They just gave me this autopapa and told me the machine would do dthe rest.
I'starting to see cross-eyed when I read now, so the Sonota is starting to work. Off to bed...

[davjan4]

I've been in bed an hour andhad to get up. I started to drift off to sleep three times, and all three times I woke up gasping. I'd stop breathing, then it would start increasing the pressure, then it would blow my mouth open and I'd have to rip the mask off my face to catch my breath. It gave me a killer headache too.

[Snoredog]

if you can use it 1 hr the first night that is better than nothing, keep trying every night.

Try and use a TylenolPM or Unisom when getting to sleep, if the pressure seems blowing too hard hit the Ramp button it will drop it back down to the Minimum set pressure.

You have to be careful setting the Minimum pressure to 4.0 cm, most people cannot tolerate the pressure that LOW, the reason is the pressure is NOT high enough to flush out your exhaled CO2 that you breathe out, when that happens and you breath too much CO2 you will get a headache. In order to properly flush out your exhaled CO2, you need at Minimum pressure of 6.0 to 6.5 cm.

If you are swallowing air where it reaches your stomach or intestines, then you probably have a compromised or dysfunctional LES or Lower Esophageal Sphincter. The LES can become eroded away from years of untreated GERD.

You should see a GI specialist to rule that out. GERD untreated can make your OSA worse. If you have GERD they will give you a acid pump inhibitor like Prilosec and it would also help if you elevated the headboard end of your bed with some 2x4's.

[davjan4]

I do have GERD, and I take Protonix for it. I just got on it, so I will probably not see improvemenin that area for a while. My GERD is not typical in that I do not ever have heartburn or feel it. The ENT said that you can still have GERD and not taste acid in your mouth, have heartbburn etc.
After a rought first two hours, I switched to the full face mask. IT was better in that I could more comforatbly lay on my side, and if my mouth opened I did not awaken gasping.
They did set the machine on 4, and at firt it does make me feel like I'm suffocating. I don't know how to get it up to a 6 or 7. I ws not given a phone number for any kind of assistance. When I push the ramp button it will go up to 5, but thats as far as it will go.
I took the full face mask off at 5:00. I figured that 3.5 hours with a mask the first night (I went to bed at 1:30AM) was enough. I then slept without waking until about 8:00. So, oddly enough, I feel like I slept better off the machine than on.
I dont know if it did anything during the night. Is there a way to see way it did before I take it back Monday to have the info downloaded? As it is I will not find out anything until Aug the 21st. That was the soonest I could get a follow up appt.
There is one advantage to sleep apnea. I go to bed so late that I've takenujp a new hobby: stargazing! I try to take pictures of the stars etc with my DSLR and watch for shooting stars. We are in the middle of the Perseids shower right now. I even saw a metior on wednesday at 8:30, when it was still light. It was as bright as a car headlight, and huge...