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New to the group and need help


#1

I have used a CPAP for 20+ years. In the last year I have lost 100 pounds and all of my teeth. I cannot find a mask that fits properly and the tech working with me, through my insurance, can’t either. I have purchased, outside of my insurance, nasal masks, full face masks of various sizes, silicon and fabric pads to try to make the masks fit. I have to tighten the mask so much to get a seal, I end up with headaches, not to mention sores on the ridge of my nose and creases on my cheeks and forehead. I have talked to three sleep doctors, the techs who administer the sleep tests, my cardiologist and just about anyone else who will listen. I wake up ready to go back to slerp. It is almost as bad as before I was diagnosed. And although I use the humidifier in my machine, my mouth sticks together from the dryness. Does anyone have any suggestions? I would think that the sleep docs would be concerned that the equipment I have is not working to my benefit, but they just nod sympathetically and tell me to keep trying to find a solution.


#2

So sorry you have gone through this frustration! How did the CPAP cause you to loose your teeth?
I have had similar problems with dry mouth and throat. I read the book that came with my machine and the book recommends that you place the machine lower than your bed. I tried that and it is better. I have the humidifier on 6-7. I fill the humidfier to the top line. It is usually gone the next morning 7-8 hours later. I set the ramp time on 20 minutes. It has been helping. I also purchased a wedge at bed bath and beyond. I place my pillow at the bottom part of the wedge and sleep on my side. It has helped. The biggest issue is the mask for me too! Too loose, too tight, my nose itches, my mask feels damp around the edges. However, I am sleeping better. I also purchased a small matching that allows me to hear different sounds. I listen to the sound of the ocean which helps me not to focus on the CPAP. I have not lost any weight yet. I am going on four months now.
I am sorry our doctors cannot come up with a solution! Maybe that is why they call them practitioners,. They practice on us until they find answers!
I hope your doctor can come up with a mask that works for you!
Take Care, Sue


#3

Thank you for your response Sue. Actually I had my teeth all removed because they were in such bad condition. Nothing to do with the CPAP. I keep my machine in a drawer under my bed so it is lower then my head. The humidity has never helped even though I use it every night. It’s just frustrating having a diagnosis then getting something that is supposed to solve the problem but doesn’t. I keep hoping my doctors will finally realize, especially since I have told them several times, that just because I have the machine and use it everyday doesn’t mean it is helping me. I will keep trying to find someone who can help me get what I need. Thanks,again Sue.


#4

Hello there. I think I can help, but before I can I need to know several things so that I can put you and I on the same page. You can reach me at 630-546-0813. Kindly leave me a message and call back number in case I can’t answer the call. Thank you and God bless.

Ziggy


#5

Thanks for the responses to this very important issue… And, @Ziggy, you are just awesome! Thanks for reaching out to one of our Forum Friends :slight_smile: in our terrific community here :slight_smile:
Sleep well…Be well,
MotherT


#6

I think dry mouth and eyes are a common complaint of cpap users. It may sound strange but I found that my mouth gets more dry when the humidity on my machine is higher; also seemed to be worse when I used the heated tubbing. I chew a lot of sugar free gum with xylitol, drink a lot of water, and keep water by my bed
Have you thought of having your dentist fit you with a type of mouth guard the will help you better fit with a mask? Just a thought.


#7

Toni, thank you for the suggestions. I have purchased a mouth guard but it turned out to be too small. I will talk to my dentist though. The only problem with a mouth guard is that the gums need to be uncovered for 8-12 hours a day to stay healthy. I will talk to him though to see if he has an alternative.
I too have found that the humidity can make the dryness worse. I wonder if there is anything that can be added to the water to help.
Again, thanks for the suggestions. Glad I found this group


#8

@AliceD68 , We are also very glad you found our group here in the ASAA Community. Please keep sharing your issues… Someone here has very likely had the same experience, and they are nice enough to share their successes.

Sleep well…Be well,
MotherT


#10

Thank you so much for the information. I will be booking an appointment with a Doctor I found in my area tomorrow. For the first time I feel like there may be hope. My health has really been affected with high blood pressure and memory loss as well as general fatigue. It’s as bad as when I was first diagnosed. You have offered me a second chance. Thank you again.


#11

Oh @AliceD68 - We are all so glad you are here. Many wonderful members of this community are always here for you! Let us know how the visit to the doctor goes!

Sleep well…Be well!