Please Share Your Thoughts, I am Desperate!!!

[Mt Soap Lady]

My Doctor tells me that I am wearing out my heart because I don't use my CPAP machine. When I go to the CPAP store I can't get answers to my questions and I realize that only the people on this list have answers. The Respiratory Therapist at the store has no idea about Sleep Apnea from experience, beyond her work in the classroom. This is my dilemma. I am reasonably comfortable in my mask...it is two pillows and seems to work well. My CPAP machine provides humidity. It all seems ok there. The problem is...it takes me hours to go to sleep, and when I get to sleep I wake up choking. It is very unpleasant and frightening. It happens at least twice a night. It feels like my throat gets dry and closes...until I can get it moistened with saliva I can't breath. Has anyone here ever solved this problem...or even heard of it? Thank you.

[cflame1]

you may be mouth breathing... what kind of mask do you have?

[elena88]

you poor thing, thats awful what you are going thru...

who referred to your sleep study? was it your primary, or someone else?

do you have a sleep specialist physician?

this should not be happening to you.... but you in the right place to come for help if you cant get it from your doctor or equipment provider..
you should be able to, so if you can find a better one, do that as soon as you can.

Now if you can up to the left part of the screen and click on the user control panel, then click on profile, then click on edit equipment,
then add your machine and whatever on there.. and add it as text..

It sounds like you are mouth breathing too.. but your pressure also maybe wrong..

do you know your titration pressure?

do you have a copy of your sleep study?

do you know your AHI?

All these things you need to know, and if you dont, everyone here will help you figure it out..

dont despair, this can be resolved as soon as the mystery is solved..

elena

[Muse-Inc]

Your CPAP therapy is not working as well as it should and needs adjustment. Please answer as many of the questions as you can so we can make some suggestions that might help. The dryness problem sounds like you are losing precious therapy air via your mouth or mask leaks -- do you know how to read the overnight leak on your machine? If so, what is it? If it's high, we can make some suggesions about reducing it if we know the name of the mask.

[xerort]

To me, sounds like pressure is off which equals an auto titrating unit....


Or, something out of the box:

Ever have problems with heatburn, naseua, upset stomach, not neccessarily diareha?

Sometimes cpap can push air into your stomach. which might (and I say might) be causing reflux. I get pretty bad reflux if I eat before I go to bed. Sometimes, the reflux will actually make it into my mouth, where it is inhaled and almost pushed into my airways due to the cpap.

When that happens, the airways shut down like fort knox for what seems like three and a half days, but is probably more around 20-30 seconds. Horrible wheezing, gasping, choking abounds.

I've found some pepto before bed helps immensly. Do try, and PM me if it works!

xerort

[Emilia]

Please take a minute to go to the User Control Panel at the top left. Click and then chose Profile and then Edit Equipment. From the pull down menus, choose your gear and then choose to show it in TEXT not icons. This will allow us to know what machine, mask, etc. you use and not have to guess or ask each time you post.

Are you using the humidifier? If not, that may be part of the problem with the dry feeling. Until we know the answers to the questions asked above, it will be hard to offer good advice.

[Mt Soap Lady]

Yes, I do use the humidifier. Auto Titrating? Software? With my last mask I swallowed air and had the resulting flatulence problems with that. No, not too much upset stomach or heartburn. I don't know how to read anything on the machine. At the CPAP store they always turned the machine away and I wasn't able to see anything they were doing with it. They said it was because they didn't want me to adjust it myself. I don't know how to read the overnight leak information. I haven't seen my sleep study. My family doctor referred me for a sleep study. I had two sleep overs. A sleep study specialist came from 140 miles away and prescribed the CPAP. I have a deviated septum, if that makes a difference. I know the doctor set my number at 13, and they told me at the Store that is very low. AHI? Do they make mouth covers, or is that something people make themselves? I apologize for being crabby and whiny. It isn't my nature, but I would love to sleep well once and wake up without a headache. I have done some really stupid things in my shop lately, and I think it is a lack of sleep issue.

I will contact the doctor and ask him to give me some of this information. Thank all of you.

[Breathe Jimbo]

13 is not "very low." You may be dealing with morons.

[elena88]

Yikes.. okay first off, I guess does anyone know if her machine is therapy data capapble?
If so, can we get a link for the software?

Honey, it looks like you have been kept totally in the dark, and thats a tough spot to be in with this equipment and your issues.
Obviously you are not near a sleep center or hospital which provides sleep medicine?
your primary doctor is not a sleep doctor..
your equipment provider has a store? and they told you thirteen was a low pressure?
eeekoroma, not for me, thats not a low pressure at all.
It does make a difference if you have a deviated septum, thats an added complication for your breathing situation..
you are not being crabby and whiney, you just would like some answers to make your therapy work, good for you..
Yes, contact your doctor and explain all of this to him.. Im not sure if your machine is a cpap or an auto, says its auto? is that right?
I think you would really need an auto if your sleep doc had to come such a long ways to get you a machine..
Hang on, stick around.. get all the information you can from your doctor.. and start reading the cpap wiki up there and the new users
icon too.. youll feel a lot better when you feel a little bit more empowered in your therapy.. YOU are the one who this matters to the most,
so you are the one who is in charge of making it work.. and you will..

Yes, I do use the humidifier. Auto Titrating? Software? With my last mask I swallowed air and had the resulting flatulence problems with that. No, not too much upset stomach or heartburn. I don't know how to read anything on the machine. At the CPAP store they always turned the machine away and I wasn't able to see anything they were doing with it. They said it was because they didn't want me to adjust it myself. I don't know how to read the overnight leak information. I haven't seen my sleep study. My family doctor referred me for a sleep study. I had two sleep overs. A sleep study specialist came from 140 miles away and prescribed the CPAP. I have a deviated septum, if that makes a difference. I know the doctor set my number at 13, and they told me at the Store that is very low. AHI? Do they make mouth covers, or is that something people make themselves? I apologize for being crabby and whiny. It isn't my nature, but I would love to sleep well once and wake up without a headache. I have done some really stupid things in my shop lately, and I think it is a lack of sleep issue.

I will contact the doctor and ask him to give me some of this information. Thank all of you.

[cflame1]

her machine is totally data capable... but all you can get off of it is a 7 day average for AHI unless you have the software or reset it nightly.

[cflame1]

Yes, I do use the humidifier. Auto Titrating? Software? With my last mask I swallowed air and had the resulting flatulence problems with that. No, not too much upset stomach or heartburn. I don't know how to read anything on the machine. At the CPAP store they always turned the machine away and I wasn't able to see anything they were doing with it. They said it was because they didn't want me to adjust it myself. I don't know how to read the overnight leak information. I haven't seen my sleep study. My family doctor referred me for a sleep study. I had two sleep overs. A sleep study specialist came from 140 miles away and prescribed the CPAP. I have a deviated septum, if that makes a difference. I know the doctor set my number at 13, and they told me at the Store that is very low. AHI? Do they make mouth covers, or is that something people make themselves? I apologize for being crabby and whiny. It isn't my nature, but I would love to sleep well once and wake up without a headache. I have done some really stupid things in my shop lately, and I think it is a lack of sleep issue.

I will contact the doctor and ask him to give me some of this information. Thank all of you.

Mouth covers... some folks use a paper tape and tape their mouth shut... some folks use a full face mask.

[rosiefrosie]

Mt Soap Lady, Welcome. If you look at the top 3 threads, you will see one headed 'Where a cpap newbie should start' and start reading. It has very helpful information and will help with the terminology. It does sound as if you may be mouth breathing. Good luck!

rosie

[Big Daddy RRT,RPSGT]

Sounds like mouth breathing or lack of adequate humidity or both. Can anyone hear you sleep? If so ask them to watch for mouth breathing, many people experience severe dryness when mouth breathing on nasal masks/pillows. A chinstrap might help or maybe a full face mask. Data would be very helpful. You might also need more or less pressure settings even if you are on auto but the data is the way to know for sure.

[brazospearl]

Welcome, Mt Soap Lady! You've come to exactly the right place to get help to make your therapy effective. And YOU CAN make this work for you! You just need information, and apparently your medical team either doesn't know what to tell you or doesn't want you to know. But it's YOUR health and YOUR life, so congratulations for stepping up and taking charge.

If your equipment is listed correctly your machine is fully data capable, which means you can find out more than you ever thought possible. Read all the excellent info on this forum, and ask us anything because we're here to help.

[kempo]

Soapy, you have to keep your mouth shut. Taping didn't work for me and it took me several months before I found the right chin strap. Everyone is different. You need to experiment with chin straps, taping, or get a full face mask.

Good luck and don't give up.