New Machine- scared to use it.

[BirdOprey5]

I need to give a little background here.

I am 37 years old. When I was 30 I got a severe case of pancreatitis, ended up in a coma, in a hospital for a year, and eventually came home virtually bed bound. Lost all ability to walk due to "Critical Illness Neuropathy." I'm 6 foot 4 inches tall. When I first got sick I was over 360 pounds- a lot of that was fat, yes, but a lot was also muscle... especially my legs. By the time I was out of the coma and left the hospital I was down to 217 pounds. I looked so sick... all my muscles had atrophied. Since leaving the hospital in 2010 I have been doing physical therapy and whatnot to improve my situation but it is very very slow.

For maybe 4 years now I have had an ongoing cough from a nasal drip, it varies from mildly annoying to severe. I had been having trouble sleeping for years- many doctors and hospitalizations, no one can figure out how to stop it.

When I was 217 I was encouraged to start eating again, but I overdid it, and I hit 310 pounds about a year ago, and this time it was all fat. Since then I have tried hard and currently around 270 pounds and hopefully going lower.

A couple months ago my primary care doctor (who makes home visits) decided I should have a home sleep apnea test done. They sent me the stuff for the test to do at home, those particular nights happened to be rough nights for my cough, and not surprisingly the test came back as having sleep apnea.

Since then dealing with insurance I ended up getting a machine sent to me, it came yesterday. It is supposedly fully automatic, more or less just needed to plugin, put in distilled water, and use.

Unfortunately when I went to strap the mask (that only goes over my nose) to my head the head gear to hold it on is too small, doesn't fit around my head.

I figured though I would hold the mask lightly on my nose to see what it felt like.

We turned the machine on and what I can only describe as a tremendous blow of air began,,, for an instant I was overwhelmed- I could feel the air shoot down my throat and come out my mouth. I instinctively pulled the mask away from my face. I am now freaked out- I don't see how anyone could survive, let alone thrive, with that much air being forced into me.

Is something wrong with my machine? It's designed to automatically ramp up as I sleep, could that possibly be the lowest setting? I mean it felt like the output of a shop vac trying to blow down my nose.

Is that how it is for everyone? After hearing such great improvements from friends who use CPAP I was really looking forward to it- now I'm freaked out I won't ever get used to this. Please- anyone have similar experience with a new machine?

I sleep on my back only on a hospital bed in my home.

[stepyou]

My machine starts with a large pressure for about a minute or two to check the seal of mask, then it drops and starts the ramp. When I first turn it on, it is a bit intense but I'm ready for it now. Maybe try it again and see if it is the same for yours.

[Julie]

Hi - what a lousy time you've had! Please give the full name/model of the machine you have, and the same for the mask. There are very many of both out there and it would help very much to advise if we knew what you were given. It is also very important to know what pressure settings were entered (obviously by the dealer) in the machine and if they are in fact what the doctor prescribed (they often are not). You should also have a copy of your prescription (by law) and one of your sleep study results because if you post them, we can get a much better idea of what's what and try to help. Don't be scared off - things will get better! But for now, do whatever you can to not sleep on your back if at all possible - it does make apneas worse unless properly treated (which you obviously are not yet).

[BirdOprey5]

It's a ResMed AirSense 10 AutoSet machine.
The mask is a ResMed Mirage FX. Size: Standard. It fits fine over my nose but my head is very big. Before I got sick I went quad riding outside Las Vegas, the company had lots of helmets, but even their biggest one didn't fit around my head. The straps on this just around long enough, probably something I can fix myself buying extra velcro.

The prescription was for an auto adjusting CPAP with a range from 5 to 20.

When I lay on my back it's never really completely horizontal. The head of the bed is usually always tilted up some minimum level. The worse my cough might be the higher I have it tilted. The last couple weeks, knock wood, the cough has been at a minimal level and not really interfering with sleep.

Being a specialty mattress hospital bed (I also acquired severage stage 4 bed sores during my initial hospitalization) sleeping on my side just doesn't work.

Thank you all so much for responding. Feel so much at ease to know that high gush of air will hopefully be temporary.

[Julie]

Your pressure settings are very close to the default machine levels, unlikely to be adequate for therapy, especially as it sounds like you might need something more. It's important, however, that we have some idea of your study results (they can be posted here using a link from Imgur.com where you can download them) because advising where your machine might be set better to help you should be based on the results rather than wild guesses and we can help you to tweak the pressures (the lower one matters). Another option is to download Sleepyhead software (see 1st 'Announcement' - Tutorial - on main pg) and go the Imgur route - those results will tell us how you're sleeping now (vs what the study said) and be more meaningful.

[SewTired]

I'll let others help you with the machine, but I did want to mention that I hope your doctors have you on a higher dose of Prilosec or Zantac for the post nasal drip. Most post nasal drip is caused by hidden acid reflux.

[Julie]

Sew Tired - that is plainly untrue! Don't post medical stuff unless you know what you're talking about! Ridiculous!

[englandsf]

Do you have any access to a sleep tech, where the equipment came from?

If not, try talking to clap.com about masks with XL straps or look into buying some velcro strips to extend what you have.

Also post nasal drips can CAUSE reflux but they are NOT a symptom of reflex. They involve totally different organs and parts of the nervous system.

[Jay Aitchsee]

Hi Bird, believe it or not, you can exhale against that "tremendous blow of air". Most of us have felt exactly the same way at some point early on, but after time, many becomes so used to it that the machine has to be checked to make sure it is indeed "blowing".
My advice would be to try again. Turn the machine on, take a deep breath hold it , put the mask to your nose and exhale. Take the mask away, inhale and do it again until you are convinced you will be able to exhale. Then hold the mask to your nose and inhale. If air seems to becoming out of mouth from you nose, just concentrate on breathing through your nose only. Don't try to talk (yet) with the mask on. Sneak up on it. Once you are assured that you will be able to breath, and you will, just try to breathe naturally for a few minutes while holding the mask to your nose. After you begin to get comfortable, start working on the straps. Adjust them so that the mask fits snugly, but not too tight against you face. You can disconnect the mask from the hose and you will be able to breathe to help get the straps adjusted with the mask on. Once you have a pretty good fit, plug it back in, turn it on and wear it for a while to get used to it. Try to wear the mask for some time before attempting to sleep with it. After it is fitted, lie down and see how it works. See several videos on fitting to help you http://www.bing.com/videos/search?q=mir ... &FORM=VDRE
Once you get pretty comfortable with the mask, then wear it to bed.
Good luck to you!

[archangle]

Welcome, Bird! Sorry you had to join us.

First warning: When you're "fooling around" with the machine, and may be moving it around, take out the water tank or empty the tank. You don't want to spill any water back into the machine. Put the water in when you're doing therapy "for real." Don't run it without water for long periods of time unless you turn the humidifier setting down to zero.

Go over to apneaboard.com. Click on the CPAP setup manuals at the top of the screen and get the "secret" setup manual for your machine. You don't have to do anything with it yet, but it can be useful.

Please fill in the equipment on your profile. There's a link in my signtature line at the bottom of this post.

We need to know your mask type as well. There are some pictures at cpap.com that may help you find the type if you can't find anything listed on the mask. The masks are often not labeled very well, if at all.

When you first turn on your machine there's probably something on the screen that shows the pressure and pressure range that it is doing. I think yours will show something like "Pressure 5-20" and a circle with 5 in the middle. See what that number says.

BTW, the hurricane feeling goes away. I'm at 17 cmH2O, and I have to put my hand over my mask and feel the airflow sometimes to convince myself that the air is on.

In theory, the maximum pressure your machine can do is 20 cmH2O. That's 20 cm (8 inches) of water. What that means is that it's the same pressure you would get if you stuck a soda straw into an 8 inch deep glass of water and gently blew bubbles out at the bottom of the glass. It still panics some people.

To avoid panic, hold the mask gently to your face without the straps. Then turn the machine on. See what the pressure readings are on the screen. It panics people sometime, but the pressure is not really that high. Get used to the pressure in a non-threatening situation.

Another trick is that you can close off your nose against the pressure and breathe through your mouth. (Assuming you have a mask that doesn't cover your mouth.) It's hard to describe, but your soft palate can close of the back of your nose. It's the same thing you do when you blow up a balloon. You automatically close off your soft palate so that air doesn't come out of your nose.

Another anti-panic idea is to put on just the mask without the hose attached to get used to it. Also, using the machine while awake for a while may help you get used to it.

[PoolQ]

You need to understand how the pressure and masks work with CPAP. You said you put the mask over your nose, turned the machine on , and air came blasting out of your mouth. This is exactly what should have happened given WHAT YOU DID. it is NOT what should normally happen.

when you turn the machine on it will try to bring the mask pressure up to your starting setting, in your case 5 cm H2O. With your mouth open the machine cannot actually do this, but it tries by increasing the flow rate which is what is blasting out of your mouth.

Try it again and keep your mouth closed and the mask sealing well around your nose. With a pressure target of 5, the machine can reach this easily and it will then reduce the flow rate

This will be 1-2 seconds and will not blast you. If you want to make it go faster you can take a deep breath through your nose right when you turn the machine on, you will come up to pressure very fast

Once at pressure the machine only has to work hard enough to keep you at pressure

[chunkyfrog]

Note: That "hurricane" you feel is actually GENTLER than the breeze a dog gets
when he hangs his head out of the car window.
Seek your inner dog, imagine yourself enjoying this breeze.
I love it. So do many others.

[kaiasgram]

We turned the machine on and what I can only describe as a tremendous blow of air began,,, for an instant I was overwhelmed- I could feel the air shoot down my throat and come out my mouth. I instinctively pulled the mask away from my face. I am now freaked out- I don't see how anyone could survive, let alone thrive, with that much air being forced into me.

Is something wrong with my machine? It's designed to automatically ramp up as I sleep, could that possibly be the lowest setting? I mean it felt like the output of a shop vac trying to blow down my nose.

Totally understand. Nothing is wrong with your machine. I had the exact same experience the first time I put a mask to my face and turned the machine on. Instant panic. Now like Archangle I sometimes have to check to make sure the machine is still on because breathing feels so normal.

While working on adjusting during the day, don't put the mask all the way on. Just hold it up to your nose so that you know you're always in control and can pull the mask away any time you need to. Start with the lowest pressure, sit with it a while, breathe normally, and when it starts to feel easy enough, set the minimum pressure a cm higher and sit with that for a while. Keep repeating this practice and work up to around 10 cm. Honestly, it works to do this gradual desensitization. I think by the time you get to 10 cm, you'll be able to handle higher pressures while you sleep -- if your machine even needs to go above 10 cm. You'll have to see once you start sleeping with it.

[BirdOprey5]

Thanks so much for all the ideas/comment.

Here is my sleep report- http://imgur.com/a/iuqm7

3 pages. (The results of each of 2 nights and the overall report.)

Thank you for any suggestions you may have.

Since I can't get to their office they sent me the machine figuring we can figure out how to use it, but if we need them to come to the house it would be toward the end of the month. They're only in this area like once or twice a month.

[BirdOprey5]

The last 3 posts above my last post have been particularly helpful and comforting, thank you all!