New CPAP User

Hi Everyone,

As of last night I began using CPAP with a nose mask. I had a rough night because I felt like I was smothering. Does anyone have any suggestions on how I can let go and give control to the machine?

I look forward to hearing from you.

Anna

2nd night was a bit easier. But I still could not back it through the night. I have the warm air humidifier in my unit and have noticed that my body temperature seems to go up too. Or perhaps it was anxiety.

I remember my first nights of CPAP use. I was just like you. Here's what I did. I started the night out wearing my mask until I absolutely could not stand it anymore and then took it off. Just make sure you are using it as much as you can. When it starts bothering you, tell yourself "Just 15 more minutes". Then if it is still bothering you, take it off. If you wake up again, put it back on for awhile. This isn't what a doctor would tell you to do but it's better than deciding not to use it at all. As for the warm humidifier, you don't have to use it. I keep distilled water in mine so the air moving across it helps keep me from drying out but I don't use the heat. There is too much condensation! Keep at it and before long it will feel natural. Just don't give up!!

Dear Ana,

It does get easier!

I now wear my mask every night through out the night. Getting to this point has definitely been a process. Starting out and my transition to nasal pillows were particularly difficult.

I agree with Ruby about setting specific time goals. I use to review the hours of use on my CPAP daily. I found reviewing the numbers helpful. I have also found everyone is different. It may be that you want to have a buddy to discuss daily. I am also a firm believer in setting up rewards. Sometimes in the morning, I live on the wild side and take my CPAP off for 30 minutes or so before I get out bed.

Echoing Ruby's comment: Just don't give up!!!

Great comments everyone. Agree, don't give up. The benefits down the road far outweigh the "newbie" challenges. I have some outcomes questions for all of you related to the comment about having a buddy.

1. How much help have you gotten from your healthcare providers...regular doctor, sleep doctor & staff, CPAP provider staff?

2. What were the most meaningful & helpful interactions and advice you received?

3. Where have you gotten the most support?

As others have said, it is a process. Initially, I used to get tangled up in the hose since I turn a lot at night. Almost never have that problem now. Initially thought I can't sleep with this on, now I use it even for naps. Regarding the humidifier, I usually don't use it unless the air is very dry in the house. It used to cause whistling during the winter because beads of moisture would condense inside the mask and would collect at the exhaust hole. Now that the hole is on top of the mask rather than the bottom, that is better, but I got used to not using the humidifier. I did find that on warmer evenings in particular, it made me feel too warm.

1) How much help have you gotten from your healthcare providers...regular doctor, sleep doctor & staff, CPAP provider staff?

All of my health care providers were supportive. I found the fitting process less helpful. A friend eventually helped me identify masks that I was comfortable.

2) What were the most meaningful & helpful interactions and advice you received?

I believe we should tell new users that CPAP is like a tough class at school. You need to work at it and maybe get a tutor. After a while, it doesn't seem that difficult.

3) Where have you gotten the most support?

My wife is the most supportive. I wore my CPAP on my honeymoon, which was shortly after being diagnosed. She referred to the MASK as Qbert.

I have worked in Sleep Labs and worn CPAP for 20 years and it does take time to adjust. Machines and masks have improved over the years. Try different masks and find one that is comfortable for you. Most manufacturers have a 30 day return policy so you can get a different mask from your home care company.

Great responses. Let's keep the discussion going Take a look at the questions in post #5. How would you answer them? It's great to have responses from both patients and providers AND some who are both. I have one more question to add. This one is for providers.

1) How hard is it to keep up with technology?

make that 2 questions

2) Have you been able to learn the technology well enough to personalize therapy for all your patients and find the time to do it?

Help from healthcare providers My sleep studies were very well done and if I have a question, it is answered promptly. However, there was never any follow-up or suggestions of other avenues, support groups or places to look for quality information. Helpful interactions Actually finding this site has been the best (only) place I have come across so far and it was just a fluke that I found it! Most support I have pretty much done this all on my own. My husband has never complained about sleeping with Darth Vader but I have never been comfortable with him seeing me wearing it.

Ruby, Can you expand on your comment about not being comfortable having your husband see you with the CPAP on? That would be good insight for providers. Some people may just refuse CPAP for vague reasons without realizing that is the core problem. Solve that and maybe others could succeed with therapy.

I had a similar experience to Ruby regarding follow-up. My PCP recommended a new study 5 years after my first one. I called the Sleep Center and they indicated that the office no longer had my records since I had "not complied with follow-up appointments." I told them I found that interesting since I had never been scheduled for a follow-up appointment.

Regarding the question about not feeling comfortable with a spouse, I have the same experience. The big chunk of plastic and straps on your face makes it feel strange to cuddle, in part at least because you can't talk easily or give each other a peck on the cheek. And if there is going to be any sex, it must be pre-planned so that you don't put on the mask.

I am 59 years old and do not have the body I had even 10 years ago. In a normal relationship, that shouldn't be a problem and it isn't for us. But compound the image I have of myself with knowing that my husband frequently sees me with this ridiculous looking mask on and my self-esteem goes down the toilet. I cannot begin to explain how much I hated the idea of wearing this around my husband. I fought and cried but realized I had to have it. Of course, it isn't worn during intimacy but he sees me every morning and every evening looking like a being from an old science fiction movie. I think it affects me more than him but it sure isn't sexy!

Wonderful comments 295563, Ruby and Mike. So, like always, I now have more questions.

What would it take to think of the CPAP as a team effort, as a gift to your spouse to keep you healthy and happy so you will have those beautiful golden years of retirement you have been planning for? A gift so your spouse can sleep comfortable without worrying about you? Could CPAP just be part of your life planning like eating well, exercising, saving $$$ etc.? How about the humorous approach as noted in post #7?

My spouse is not a problem at all. He has been excellent about it and has never raised it as an issue. He tells me that he is happy I wear it so that we have more years together. It is really more about my sense of self. As with most medical conditions, when you can no longer do something you took for granted (being able to sleep without an apparatus), it not only emphasizes your mortality, but also generates a bit of a sense of being defective, rather than perfect as we all like to imagine ourselves to be.

Good point MikeJ. That's something we all wrestle with in most areas of daily living as we age. Everyone deals with it differently. I think I'll make an effort to find the humor in it from now on. As they say, it is what it is :-)

I wanted to say thanks everyone for the post....this helps me as a new user myself a bit. I have many questions and am already finding this site helpful. I did make a post with some questions but it is pending.

Hi Everyone,

Thank you so much for the amazing support! I am working very hard at keeping the mask on during the night. I am able to tolerate 4 to 5 hours per night. That is about 4 of those hours with good solid sleep. When I get up to use the bathroom, it's a whole process all over again .... getting the mask on and adjusted and falling back to sleep with it. I am looking forward to the night that I can sleep with the mask all night without issues. I was very concerned that Mike, my partner would be kept awake by the sound of the machine and my Darth Vader breathing, but he has assured me that he does not hear a thing. I have a co-worker who uses a BIPAP and is my support person. After our daily work meeting we take a few minutes to talk about our apnea and our machines and it has been a great help. Reading your responses has been a great help as well. I am very blessed to have such great support!

Anna

I started using a CPAP in October and I adjusted very quickly. I was using it so much that my insurance company stopped monitoring me after 2 months (usually they monitor for 3 months). One thing that I've found helpful is to put the mask on while I'm laying in bed watching TV. This way, I've already adjusted to the mask by the time I'm ready to go to sleep. If I wait until I turn the lights off to put the mask on, then I struggle to adjust and I get frustrated.

Good points from everyone and good discussion. My whole personal esteem issue could probably have been avoided if I had found someone to talk to. Either on a discussion board or in person would have helped a lot. I am very happy to have found this site and look forward to giving and receiving support and information. Has there been thought of having support leaders, available at certain times, to talk with people one-on-one? That truly would have helped me. Just quick thoughts--train 3-4 providers or patients that would rotate on certain times and days to be available to talk. No medical information would be given, just support. Post the times when someone would be available to talk. Or you could do webinars with guest speakers and Q&A time. May not be feasible at this time but something to think about. Because there really isn't a lot of support available, especially in smaller towns or rural areas.