What if one tried not using their CPAP for a month, as a trial?

I've had mild obstructive apnea for 6 years. I have a small face and have tried over 30 masks. I now wear the best one I can find but I can only use it for limited time because it causes a breakdown in cartilage and also causes sores on my nose. I'd prefer not to get skin cancer in my efforts to sleep at night. My Pulmonologist thinks I may have a form of Narcolepsy and he has given me a drug that has improved my quality of life far more than the CPAP therapy has. All that causes for me is extreme anxiety so that I have trouble going to bed at night, even if I am tired. Anybody have similar problem?

I also never experience REM sleep and he thinks I never have.

Thanks for any suggestions or comments anyone may have.

I think the first step would be talking with your Sleep Specialist or Pulmonologist about your idea of a 1 month trial without CPAP. Once you have his input about risks/benefit, you can make an informed decision.

Is you new med something like Nuvigil, Provigil (generic = modafinil)?

I have come at the problem from the opposite angle. I have been taking Provigil since it was a new med in the 1990's. When it went generic, I switched to generic modafinil. It is just this year that I was diagnosed with OSA. I thought my extreme sleepiness was part of seasonal depression. In my situation, I would like to stop taking the med, if possible. I think that might work, because I am doing OK with CPAP, so the OSA is being treated. The proposed med change that I will try is under the supervision of my MD with input from the Nurse Practitioner at the Sleep Clinic.

I can understand the bedtime anxiety that you are having, given all of the different masks you have tried and the problems that you have run into.

Here is another thought. Have you checked to see if there is an AWAKE support group in your area? That might be another place where you could get some input and/or support. I am amazed when I hear from someone who has been on CPAP for 20 yrs. I don't think I had even heard of CPAP until recently.

About REM sleep. I remember having dreams as a child and young adult. At the time of my sleep study, I was not aware of dreams. The results showed that 6% of my sleep was REM. Since I have been using CPAP, I am aware that I am dreaming again. I may or may not remember the details of tne dreams, but I know that I have been dreaming. What is more important to me is feeling more mentally clear during the day and not as tired.

Good luck. I hope you get some good input that helps you feel better and healthier.

2Sleepy

Hello 2Sleepy,

I shall respond to your interesting note as soon as everything I write doesn't disappear! Darn computers!

Thanks!
Member 495291

I am new to this whole sleep apnea stuff. I have had my machine for less then a month. I too have a small face and have had sores on my nose. I am determined to get quality sleep since I have most likely had sleep apnea my entire life. Try using mole skin on the bridge of your nose. It will give ypu the added height for a better seal.This seem funny but works if the bridge of your nose is small. My problem was air leaking and getting in my eyes. I am on my second mask and with this added no more air in my eyes.....at least at this time.

I have a small face and use a full-face extra-small mask. Sometimes the nose problem is because the mask isn't right for you. One of the biggest frustrations is finding a mask that fits and does not cause sore places or leaks. And of course you can't just try several because insurance won't pay. A good sleep study will let you try different masks during the night but again, that costs money. There are lots of products out there that can help, it's just finding the right ones. Since I have the full-face mask, I get strap marks on my cheeks. Not a problem except it looks bad. So I found a product that is soft and wraps around the straps fastening with Velcro. They help a lot! I have tried gel packs made specifically for the bridge of the nose but can't get my mask to seal as it should. Maybe we need a post for products that people have tried and if they do/do not work.

I just use the pad part of a bandaid...cutting most of the tape part off, leaving just enough to hold the pad in place on my nose. I also put a small piece of one inch wide tape (1/4 inch long) on top of that. My nose may be a bit red when I wake up, but that disappears shortly after I wash my face. No more sores...been there and do not want that!

Particularly good DMEs will have a wide selection of masks for you to try in their office. But I have YET to have one suggest I lay flat to try it! The recliner in one office was a nice touch but it did not go back far enough. Insist on trying the mask with air blowing into it while you are in your normal sleeping position -- it boggles the mind that so many have wanted me to try a mask on while sitting up! Sheesh.

Also, try loosening the relevant strap just a tiny bit. Sometimes that is enough, sometimes it is not.

I do not understand why, in this age of 3-D printing, masks are not yet being custom-built for our unique faces! Soon, I hope. Til then, understand you have much company in your search for the mask that will let you go "ahhhh..." As you slip off to sleep.

My solution was an ENT who is doing internal nasal reconstruction and I can now use pillows -- massively huge improvement for me! After 6+ years...

Endure!