Just got back from seeing my NP today for a terrible cold and wheezing that is lingering. Needless to say, she is giving me antibiotics for sinus infection and acute bronchitis just in case this is bacterial instead of viral. While I was there, I mentioned I heard nothing about my sleep test. Lo and behold, I have sleep apnea. It will be a while before I probably hear from them about a CPAP machine, so I have a question.
Anyone here with Primary SJS that finds the CPAP machine helps them in any way or reduces some symptoms of SJS?
i have sleep apnea but not terrible and not due to some neurological thing . i made a sleep test in the hospital, its my tongue thats prolaxing while i sleep. i refuse cpap. i just try to sleep on my side and its not easy for me
I could not tolerate both the cpap & bipap machines. Dried me out horribly..even with the humidity on.
SjoDry
I use a CPAP because my throat closes when I try to go into REM sleep. I'm in a kind of half sleep most of the night. The CPAP really does let me sleep. And I think there's also an element of ritual - my body knows when I put on the mask, it's time for sleep.
The masks are annoying. When it;s working well, it doesn't make much sound, but it whooshes when the mask leaks. And until a hoseless CPAP is invented, you're tethered to the machine by a (long) hose.
The masks with nasal pillows don't seem to affect the eyes much. I now use the Dreamwear mask which has a soft piece that slides under the nose and sort of seals with your nose. A little tenuous with side sleeping, but I've figured out how to use it.
The air going in also goes through a humidifier that you can adjust.
If you sleep with your mouth open, you may need a mask or something to keep your jaw closed.
For awhile, I was wearing a blindfold when I slept, to keep my eyelids closed - that also prevented air from blowing across them from the CPAP. Another alternative.
I don't think it directly helped Sjs dryness. But really, there is nothing like a good night's sleep. Nothing! Sleep apnea can also cause heart problems - apparently whenever the body is jerked awake during the apnea phase, a little jolt of adrenaline is circulated. Repeated adrenaline can cause heart issues like A fib (my husbands cardiologist told him that).
Sorry about the sleep apnea Judie.... I hope you can find a comfortable mask to sleep with. They do come with humidity chambers. My husband swears by his and brings it with us even if we travel for one night. He has to wear the full mask b/c he sleeps with his mouth open. They make a variety of masks for comfort, try them out and see which one suits you best. He had much more energy and isn't so sleepy during the day. Good luck to you! Keep us posted.
Thanks, everyone. One more thing.... does anyone know anything about the soclean.com machine? If not, how do you keep your CPAP clean so not to get another sinus infection, etc.? I promised my husband that when I get my CPAP machine, we will take a selfie of us wearing our CPAP machines and send it to our friends!
The soclean machine looks interesting. It sounds like it would keep the mask clean. But don't forget the tubing as well. It seems like immersing the mask and the hoses (and water reservoir) in warm soapy water, rinsing, and hanging to dry during the day might be just as good, maybe better. There is also an air filter on intake air on the CPAP machine which needs to be replaced fairly often.
The photograph sounds cute. My husband and I sometimes refer to ourselves as Mr. and Mrs. Vader. and the bedroom as the Deathstar. Luke I am your father........
Sooki, you are so right! Before I knew I had sleep apnea, I used to say to my husband, "goodnight Darth". After we found out I had sleep apnea, we were thinking that we would be Mr. and Mrs. Darth Vader. Now we can name our bedroom "the Death Star"! LOL Sooki, you know how to turn a unfortunate situation into a positive outlook! Love and hugs!