New on the cpap

[sleepy2145]

I am new on the cpap machine, received it on Friday, this is Thursday at 3:30 a.m. and can't fall asleep. Still jerking myself awake while trying to fall asleep. Woke up with a headache on Saturday, Monday, and again today, Wednesday. Headache was bad today. I know that Saturday night/Sunday morning, I woke myself up while gasping for air which was something new for me. I have a Philips Respironics System One machine. It is automatic and the settings range from 8 to 15. I believe it is set to ramp for 5 minutes. Sometimes when I awake in the night, I can feel a lot of air, perhaps it is running at the 15 mark. Don't know if the heavy air is waking me up or not. I have not been fortunate to say the machine has made a big difference yet. Any advice for me?

[zoocrewphoto]

Can you tell us more about what you are struggling with? For example, you mentioned you woke up gasping one night. Did you feeling that you weren't getting enough air? Could you feel the air flow? A lot of times, we can't feel the airflow, which is normal, but scary if you aren't used to it. I have to wave my hand in front of my mask vent to check to see if it is really on. It's really strange, but I can breathe fine with the mask on and the machine off. But if the machine is running at too low a pressure, I feel like I am not getting enough air.

Do you feel any claustrophobia with the mask? What kind of mask are you using? Did you have any trouble staying asleep before you started cpap?

I'm sure other people will ask better questions. I am fairly new to this (only 9 weeks now). I had an easier start than you, but there were nights where I was struggling to get to sleep (usually mask fit for me), and I would be swearing at it and irritated.

I have mostly good nights now. It does get better with time and practice.

[sleepy2145]

My incidents where I was gasping, happened on one night and I literally was out of air and felt like I was struggling to get the air in fast enough. I have a full face mask and do not feel claustrophibic. I have had issues with sleeping for years and finally was able to get a sleep test this year. During the appointments for the sleep tests, I explained to my doctor about my restless legs and having to get up all night because of them. He has prescribed Pramapexole for it and I have been sleeping through the night for the last month and a half, it has been heaven. That has changed with the cpap. I take the mask off after 4 to 5 hours as my nose is getting a lot of pressure from the mask and hurts. I have to keep it on pretty tight, I have played with the straps and can't seem to get it to stop leaking with the straps lose. I get leaks by just rolling over to my side so I am guessing being on my back is not the best therapy nor am I used to sleeping long periods of time on my back. During my titration test, the technician kept coming into my room and changing the mask as I stopped breathing everytime I fell asleep. At that time, they said they didn't get enough data from the test as I was awakened over and over and then insomnia set in. The doctor went ahead and ordered a machine based on that sleep test.
Thank you for responding.

[Mary Z]

sleepy, it often takes more than a week of 100% Compliance to get you feeling better. Keep at it

[Julie]

Hi - these are some of the side effects some people have had on Mirapex... do any of them fit what you're feeling?

Hallucinations
Falling asleep during the day, sometimes without warning
Feelings of internal restless or jitteriness
Strong, uncontrollable muscle contractions
Any abnormal muscle movements
Severe dizziness or fainting
Muscle pain
Any vision changes
Difficult or painful breathing
Problems with impulse control

You might want to talk to your doctor again..

[sleepy2145]

Dear Julie,
Thank gosh I do not have those symptoms. I guess I am lucky.

[tiredmama]

I had horrible leaks with my full face mask in my first week. It was a matter of learning how to sleep so that it leaked less...there are ways of shifting position that don't cause a leak or cause it momentarily and you can shove the side of your face into your pillow just so to stop it without having to fiddle with the mask.

It could be your mask isn't a good fit for your face. Mine isn't that great of a fit but I'm making it work as best I can while I wait for a hybrid mask. That might be a good option for you as well, as it doesn't put any pressure on the top of your nose.

[jweeks]

During my titration test, the technician kept coming into my room and changing the mask as I stopped breathing everytime I fell asleep. At that time, they said they didn't get enough data from the test as I was awakened over and over and then insomnia set in. The doctor went ahead and ordered a machine based on that sleep test.

Hi,

This doesn't sound good to me, but then again, I am just a clueless CPAP patient up in the great north woods of Minnesota. Do they know why you stopped breathing? If not, how could they possibly come up with a treatment plan if they don't even know what is wrong with you? On some patients, they need lots more air, almost like a kick start when this happens. But on other people, the air confuses their CO2 sensor, and the brain actually tells the lungs to stop breathing. Without knowing why you stopped breathing, it is very possible that the CPAP that you got is actually making things worse.

Perhaps I am totally wrong here and your doctor actually has a good diagnosis and a valid treatment plan. I am not convinced of that, however, so I would suggest that you get a 2nd opinion. Try to find a sleep center that is connected with a major hospital cardiac care center, and not one that is located in a converted gas station or factory building in the industrial park. When you are dealing with the complexities that you appear to have, you need a top notch sleep doctor who does this stuff full time.

-john-

[dragonflybeach]

Are you using humidification?

[zoocrewphoto]

I had horrible leaks with my full face mask in my first week. It was a matter of learning how to sleep so that it leaked less...there are ways of shifting position that don't cause a leak or cause it momentarily and you can shove the side of your face into your pillow just so to stop it without having to fiddle with the mask.

It could be your mask isn't a good fit for your face. Mine isn't that great of a fit but I'm making it work as best I can while I wait for a hybrid mask. That might be a good option for you as well, as it doesn't put any pressure on the top of your nose.

I will second this. The first couple weeks, I had a really hard time getting my mask to fit and stay leak free. I still have problems with it sometimes as I am only 9 weeks into this. But sometimes, I can push my face into the pillow, or sometimes just tilting my head upward, will stop the leak.

I have the Quattro FX, and I really like it. I did get the MIrage Liberty hybrid mask, which is okay, but I have only tried it for part of 3 nights about a month ago. I am not comfortable with the pillows for more than a couple hours. So, I have it as a backup.

[sleepy2145]

To Jweeks
This is the second doctor, I did not understand why I was ordered a cpap machine when the titration test didn't solve the problem. I have an appointment next week and have plenty of questions for the doctor. So I am not getting much sleep, maybe 4 to 5 hours a night. I jerk myself awake when I stop breathing, have done this for years, so I thought when I went on the cpap machine, that would stop happening but not the case. I am so confused as to whether this is working or not. I know I have to give it more time but I wasn't expecting this beginning period to be so difficult, I have taken steps backwards at this point.
I thank everyone for their input, I have no one to talk to about this, no one else I know has this problem. Leave it to me to be the first
This site is great, everyone seems to be supportive to each other. Thanks again.

[zoocrewphoto]

Keep in mind that your brain has trained itself to jerk you awake for a long time to keep you alive. Now you have a machine to take care of this for you. Rationally, you know that the machine will do its job. But your brain doesn't trust it right away. How can it relax when it thinks it needs to jerk you awake. It is going to take some time before it trusts the machine to keep you alive.

It is almost like our sleeping brain is a second personality. It does things we cannot remember thinking about. For example, I have pulled my mask off several times during the night over the past month. I don't remember doing it. One time, I apparently put it back on, because I don't remember that either.

I have also had dreams when not using the machine that focus on me needing the machine. So, my brain, while asleep, is aware that I am not using it and need it. In one dream, I was wandering around some building, looking for a power outlet so that I could plug in my machine and go to sleep.

[sleepy2145]

So it has been 11 nights on the Cpap machine and things are not going well. The jerking has slowed down, that part is good. I have only made it two nights with the mask on all night. The mask is not a good fit. I have talked to my technician and she was going to order me a new mask. Not sure I am dealing with a good company, why don 't they at least have one mask of each size and style in stock? So when I called today to find out where my new mask is, I was told the technician went on vacation the day after I talked to her last. I don't believe she ordered the mask as I was getting the run-around today and they can't tell me when they expect the mask to be delivered. Hopefully they will call me tomorrow with good news. I was also supposed to get an oxygen saturation thing for my finger to test my oxygen while sleeping and that has not come either. This whole process has been frustrating for me.
The mask I have now, which I believe is too small has made a sore spot on my nose. I have to take if off around 3 am every morning as it is hurting my nose. The only position I can sleep in is flat on my back, don't dare move as the masks moves and leaks badly. Sometimes getting in on takes several minutes to adjust it so it isn't leaking. How much leaking should I expect? It is impossible to sleep while it is leaking and blowing into my eyes and around my mouth and the swooshing of air is loud. If I close my mouth, it leaks so I have to concentrate on dropping my jaw open so it won't leak. Then it slides up my nose and I start all over again. Can anyone tell me it this it typical or is this mask really a bad fit?
Thank You

[Pugsy]

Full face masks are more difficult to maintain a good seal...simple physics really because there is greater surface area touching the skin to have to seal. It may be more than mask size that is causing your problem...you may need a different model of mask.
There are many, many full face masks out there to try. Most mask manufacturers allow a 30 day trial and if their mask doesn't work it can be exchanged. DMEs don't often make this known or they often have their own house rules about how long you can keep trying new masks. Need to pin your DME down on what their house rules are. There is absolutely no reason that you should have to sleep solely on your back. With a properly fitting mask you should be able to sleep in any position you want to.

There are also mask liners which help with leaks and those sore spots. The bridge of the nose simply doesn't have much skin there to offer any padding and it is easily decimated by an improperly fitted mask or heck even with a properly fitted mask if your skin tends to be rather delicately thin. There is no excuse for a torn up nose and pain so bad it keeps you awake.

Try a different model mask...or a different size. If DME doesn't have your size...try a different model or even a different brand.
You might even consider a mask that doesn't touch the bridge of the nose. The Hybrid is one that uses nasal pillows for the nasal orifice and a mask that covers the mouth at the same time. So it works great for mouth breathers.

Also...do you have nasal issues that keep you from breathing through your nose easily? If you don't...maybe a simple nasal pillow mask might work for you. I don't know why they started you out with a full face mask. I assume that maybe you are thinking you are a mouth breather. Unless you have major nasal breathing issues...people sometimes do a lot better on the simple nasal pillow masks than they thought they would.

Finally...I didn't see if you are male or female listed..so I question if male..do you have facial hair? That of courses greatly increases problems maintaining a seal when using the type of mask you are using.

[BasementDwellingGeek]

Are you monitoring your data? What is the breakdown of Obstructive vs. Clear Airway apnea. If you are have Centrals that weren't properly detected in your original sleep study an APAP machine might not be able to help you.