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Donna

Donna
Joined Jan 2015
Donna
Joined Jan 2015

Kate,

I am a registered sleep technician, and I work with a lot of special needs children (Down syndrome, autism, sensory processing disorders, etc.) and have found that it is possible to acclimate people with these issues to PAP therapy. It takes some time and patience, but it can be done.

Generally we instruct parents/patients to start by wearing the mask while awake. Put it on loosely, and just try to relax with it on. Don't force anything. If it really bothers you, take it off. Then try again the next day. Try to wear it a little longer than you did before. Even one minute more is an achievement. Hopefully, after a while, you will get used to the feeling of the mask being on your face. Then you connect it to the machine and turn it on. When the air starts to blow at first it can be a bit like the feeling of sticking your head out the window of a moving car. It can be startling, and the first few times, you may want to take the mask off right away. But try to relax and breathe with the machine. Again, don't force it. If you only make it a few minutes the first time, that's an accomplishment! Keep at it. Put the mask on, connect the hose and turn it on. Try to wear it a little longer every time. When you feel like you can handle it, try laying down while wearing the mask with the machine on. Put it on every night, and if you feel you must, take it off, but try to wear it a few minutes longer every night. Just remember, YOU are in control of how long you wear it. Sometimes just knowing that you are in control can help you keep from getting to the point of avoiding sleep to avoid the mask.

Your sensory issues do make wearing CPAP a lot more challenging for you, but it can be done. Untreated sleep apnea is extremely dangerous. Lack of oxygen affects every cell of your body from your brain to your pinkie toe.

There are also other options for treating sleep apnea. There is a surgery called a UPPP that basically removes all the extra tissue in your airway. Sometimes it is not 100% successful and CPAP therapy is still needed. There are dental devices that advance your jaw when you sleep, but given your sensory issues, that may also be a challenge for you.

I also have circadian rhythm disorder. I find it nearly impossible to turn off my brain to sleep, so I take a sleeping pill. I also found that I sleep better during the day than I do at night, so that's how I sleep. Luckily I have a night job, so I live like a vampire. :D

I realize that you have HUGE obstacles to overcome in treating your sleep issues, but I swear to you that it will be worth it in the end. If you want to talk, or have questions or anything, please don't hesitate to email me. I wish you all the luck in the world!