Night 1 - Please Help

First I would like to say that I am so glad that I found this site. It is nice to know that there are others with experience in what I am going through.

I got my equipment from the DME yesterday. I ended up with the PR System One Pro. It appears to be a quiet machine with several features. I also selected my mask. I really wanted to get the Swift LT for Her because it looked like it would be the least invasive and claustrophobic choice. However, when I tried it on at the DME, I could not exhale against my pressure. My pressure is set at 13 and it was really a struggle to force myself to exhale against it. The DME said that many times if a pressure is greater than 12, nasal pillows will be too difficult to use. This was my first let-down. Then I asked if the CFlex + was set-up on my machine to make it easier to exhale against so that I could go with my preferred mask. He said that the doctor did not want the CFlex or CFlex Plus set-up and it has been disabled on my machine. They said that it will at times cause apnea events to occur when it is turned on. So, I had to choose a nasal mask. This was my second let-down. I went with the Mirage SoftGel because it felt the most comfortable in the office.

I got the equipment home and got all set-up with the idea that this is really going to make me feel better. Well, when I tried to sleep with the mask on, I felt like I was truly suffocating. I cannot breathe with something covering my face. Also, the sound from the mask was so loud, that it kept waking me up. I could hear every breath. I tried to continue with it and was able to keep it on for about 4 hours before realizing that this is not going to work. I cannot fall asleep and wake up constantly throughout the night and expect to function during the day. I still have to work the next day. I also woke up this morning with a horrible sore throat and a cough. I am really not looking forward to tonight and sorry to sound so down but I really do not feel like going through this pain is worth it to me. I am only 30 years old and I cannot see myself doing this for the rest of my life.

Can anyone give me any advice? This is really turning out to be a difficult experience.

The rest of your life will be longer if you persevere with the CPAP treatment.

Relax and be patient and substitute negative thoughts with positive ones.

Sore throat may indicate mouth leaking issues ... therapy is ineffective if you lose pressure from mouth leaks or acid refulx.

You will gradually get used to breating against pressure.

Keep comming back and posting issues and reading threads ... the learning curve for this therapy is steep but well worth the it.

Best of luck.

I agree with the above poster. I've only been on cpap therapy for about 5 weeks now but I can't imagine trying to go to sleep without it. It was difficult the first few nights but I was determined to succeed. This is just like anything else in life that you are trying to tackle. You have to take baby steps until you learn to run! The first night I used my cpap I probably only got about 4 hours of sleep total but even with that small amount I felt better. I consistently got more and more sleep each night until now I easily average 8 hours of sleep a night and I feel so much better.

You have to hang in there. Keep a positive attitude and make up your mind that you will *make* this work. It will get easier every night.

I'm not an expert on any of this stuff by any means but I agree that the sore throat sounds like you were having some mouth leaks? I would also talk with the doctor to find out why he doesn't want you to use the expiratory relief and make sure that is something that the doctor said and just not something that the DME decided on his own. I would want to hear that from the doctor himself/herself and explain that this decision may affect my ability to be compliant with therapy.

Don't give up after just one night! I threw my mask against the wall several nights before I found the right one. It may take some time for you to adjust to having something on your face. Try wearing it for short periods of time gradually adding some time. I'd ask again about why the C-flex was disabled. That certainly helped me get use to the forced air.

You will find help here. Stick with it. Be positive about the long-range benefits!

Let us hear from you again.

If you are having trouble exhaling with a pressure of 13 cm, I have no idea why the C-Flex and C-Flex+ are disabled!! Tha'ts what the flexes are for - to help exhale against the pressure! I tis a comfort feature.

My Auto is set at 10.5 cm to 13 cm. I don't get up to 13 cm very often but I do get to 12 and really like the flex.

I also don't believe that you would not be able to use nasal pillows with that pressure. Nasal pillows can deal with higher pressures just fine. Maybe you could get a nasal pillows mask. I don't know but I would see if the DME would exchange your mask for a pillows type. I would also tell him/her about the difficulty with exhaling and the fact that you really can't sleep because of it.

If you have to, check with your doctor yourself to see if he/she really said that they didn't want the flex enabled. I would discuss with your doctor the problems you are having with the mask and the exhalation.

The current situation is cedrtainly going to make it very difficult for you to be compliant.

I agree with what everyone has said. Don't forget, you've made it this far, taught yourself, found this forum, so don't let THEM stop you from tweaking your therapy until it's perfect.

So , enable the C-flex if you need it, get some pillows if you prefer, and above all fix those mouth leaks!

FWIW many people can use pillows even at high pressures. I bet the real issue was that you're just not used to the CPAP pressure regardless of the mask. Get thee some pillows!

Please don't give up. It will take a while to get used to sleeping with a mask, no matter what type it is. I can't speak to the issue of the nasal pillows with pressure of 13, since I haven't tried the pillows. I alternate between a nasal mask and a full face mask. I'm sure someone else who uses them will address the pillow/pressure issue.

One idea I have seen posted here is to try to get used to breathing through the mask with the machine turned on while you are awake and reading or watching TV. It can help you get used to the pressure and you will be able to go to bed with the confidence that you will be able to breathe when you fall asleep.

I also think that it would be a good idea to ask the Doctor about the C flex functionality, partly for your sake and also for the rest of us . I have never heard or read anything indicating that it can cause more apneas. Many of us do use c-flex or EPR and if there is new information that says we shouldn't use it, I'm sure we would like to know what the source is. I use it nightly and my AHI stays below 2.0 so it can't be causing much. Untreated, I have severe OSA.

By the way, there is a way to turn it on or off so you could turn it on if there was a misunderstanding on someone's part.

I don't know if this is your problem or not, but I started with Xtra Small Nasal Pillows for my Swift FX. I found that I had a hard time exhaling with the Xtra small when I first put the mask on, even at my low pressure of 7. I recently switched to a Small instead and I no longer have a hard time exhaling when I first put it on, so maybe your DME had you trying the wrong size pillow?

Regarding the sound and hearing every breath... I too felt that at first and slept with a fan on in my room to drown out the individual breaths in white noise and found that really helped me to not concentrate on the breathing sounds from the mask.

My first week had me more tired than ever before getting used to the mask and the pressures. the second week i did a lot better by the third week i felt it was easier to breathe with my sinuses with the mask then without it. Like anything you have to become accustomed to the gear being strapped to your face and not getting tangled up in the hose and knocking your mask loose. It gets easier with each passing day. Everyone here has helped me through each problem i encountered along the way. This group rules.

I'm new to the hosehead thing too, but after a few nights with my mask and machine, I love it and find sleep is a real comfort for me. I have decided the slight noise is a good white noise and lulls me to sleep! I use a Resperonics nasal pillow, medium, and once my nose hardened up and maybe it softened up a bit, I find it stays on fine. Use the Ayr nasal gel for a bit (I no longer need it) and have patience and persistence! I got my PCP to prescribe a few Ambien tablets for me and took about 3 and that was all it took for me to learn to drift off.

This is doable, so talk to your people and get the information to make it work for you. I get my S9 tomorrow!

Whee!

Oh you poor thing, that sounds miserable, but dont despair..
That is exactly what happened to me the first night. I was sent home with a machine to figure out my titration. I didnt even make it
past ONE minute.. I felt like I was suffocating, and could NOT breath agains the pressure..
It was horrible!
I said the ususal.."I would rather die than wear this %%*&&**!! thing!"

I threw the head gear off, it was the opus 360 with the f and p nose pillows which I now adore! Husband went to fetch it..

I kept trying.. (oh, pretend you are a spy being tortured, that will make sense of it!)

The first week was a disaster, I missed one entire night.. and since I couldnt breath against the pressure, my doctor
gave me an apap..

WHAT a difference!

Everyone told me not to give, up, it will get better, and they were right.. so you dont give up either, just try to figure out
what you need, what helps, what doesnt, and YOU do need some relief on exhalation.. geez, its like having a tire pump at the gas station
stuck up your nose or down your throat for goodness sakes!

First, I'm really glad you were able to get the machine with features you so desperately need. Congratulations! You won the first battle!

Having talked with you before about that battle, I'm already a bit suspicious that your doctor and/or your DME don't have your health as their first priority. I'm going to come right out and tell you that I'd turn on the CFlex if I were in your position. You don't even have to go into the clinician's menu to turn it on. Just rotate the dial one click to the right (highlight C-Flex), push it down, and you will enter the CFlex menu. Personally, I like AFlex set at 1 because I feel like it makes my mask move around too much, but this is just as personal as the mask fitting.

There is absolutely no reason NOT to use CFlex. It is there to make you more comfortable. If you're not comfortable using the mask, you're not going to use the mask. Better to use CFlex and MAYBE (though I doubt it) see a slightly higher AHI than to not use the machine at all and see an untreated AHI all the time. CFlex is there to help you get used to using CPap. Period.

With that said, the same theory applies to your mask. You need to do a little experimenting to find what works best for you... I'm not going to rehash what I said about that again, but your DME should work with you to find something comfortable for you. I have used nasal pillows in the past at my high level (14-19 cm) and have never had a problem. It's not the mask... it may just be that you have to get used to it. It may also be that you have to get used to breathing against the pressure before you are able to tolerate and move up to the pillows (that's what my RT had me do).

Stick with it... there's lots of tweaking that can be done to get you to a system you can live with. I've come to love mine.

Jenn... check your private messages...