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Thanks. Actually my Dr is an excellent sleep neurologist for my rare condition (Idiopathic Hypersomnia-IH). He just started taking over my sleep apnea portion. I called the DME and they were very helpful. I have both CSA and OSA and the machine I have is currently managing both. As far as the mask off issue I mentioned, turns out I did take 2 naps on the days listing 3 mask offs. We’re going to wait to see if it happens again. I did have a CSA when my machine turned off.
Sorry, I just joined so not sure if you are still looking for questions. I’d be interested in naps and how long they are (I take naps that are 2-6 hours long due to Idiopathic Hypersomnia). All research I’ve ever read states it’s not healthy to take long naps but what if you are sleepy 24/7/365? Being sleep deprived (or at least your body seems to think it’s sleep deprived even though you get 10+ hours daily), how does this affect you. I know memory, cognitive, etc is worse for those with a sleep disorder like IH so is there anyway to remedy it? Also, I have severe Central Sleep Apnea. How is this affecting my brain? I feel getting information regarding memory and thinking is extremely important. My brain sometimes acts like I have Alzheimer’s
I’d be interested in doing self-run experiments. I also have a rare condition called Idiopathic Hypersomnia (IH). I find the Facebook groups for IH has been extremely helpful as people post different things that help them.
I have no idea what’s causing your problem. Maybe switch (at least for awhile) to a full face mask?
I was DX with severe Central Sleep Apnea about 11 years ago. I now have both CSA and OSA but CSA is still my primary problem. I woke up the other morning at 5:30 AM and my CPAP was off. It’s set for automatic off and on so it should have been on but wasn’t. I’m thinking I just didn’t breath for too long of a period and the machine shut off. Also, looking back at reports for my Resmed machine (just got a AirSense 10 in July and love that I can see my usage on their app), I never get a score of 100. It shows I take my mask off 2-3 times a night. I never take my mask off as I can’t sleep without my CPAP. I do take a nap most days (also have Idiopathic Hypersomnia, which means I’m sleepy 24/7/365) but usually only one nap. I’m assuming that would mean I took my mask off twice but why are some days showing 3 times taking my mask off? I’m wondering if my CSA is causing me to stop breathing long enough so the machine actually turns off. If this is happening, do I have the correct machine for CSA or do I need an ASV or Bi-Pap? Any advice would be appreciated. I messaged my sleep Dr and he just told me to take the machine to my DME to have it checked.
Hello, my name is Joan. I was diagnosed with severe Central Sleep Apnea in 2004. I was waking up with severe headaches in the middle of the night, which would disappear within 5 minutes of waking up. I’d never heard of Sleep Apnea until a co-worker mentioned it. I was falling asleep in meetings. I know I had problems for 30 years before being diagnosed. I got my CPAP machine, which helped my sleepiness but not completely. I finally had another sleep test with an MSLT (nap study) the next day. After ruling out depression and multiple other possibile causes of sleepiness, I was diagnosed with Idiopathic Hypersomnia (which is being sleepy 24/7/365). No cure. I’ve seen several others mention still being sleepy even after using their CPAP. Anyone who is still sleepy should see their sleep Dr. Some are not very knowledgeable with other sleep issues, like Narcolepsy or Idiopathic Hypersomnia. I had to search out new Drs to help me. Here is a website that lists some possible causes of sleepiness: http://www.hypersomniafoundation.org/ I encourage those of you who are still sleepy, to pursue finding the cause. I’m glad someone pushed me to seek help.
If your sleep apnea is controlled by your CPAP machine but yet you’re still sleepy, you could have something else going on causing your sleepiness. I originally went to the Dr due to sleepiness and was DX with severe Central Sleep Apnea. The CPAP helped but I was still having trouble staying awake. After another sleep study plus an MSLT the next day, in which I fell asleep during the naps in under 5 minutes, I was diagnosed with Idiopathic Hypersomnia. Others get DX of Narcolepsy. I suggest making another appointment with your sleep specialist. You can check out this site for additional information on sleepiness: http://www.hypersomniafoundation.org/
I got edema but not from the CPAP machine. I first got it at the cabin years ago. Never had it prior. I realized I was having bacon every day where I normally didn’t. I cut out salt from most of my diet and that did the trick until about 2 years ago. I also have Idiopathic Hypersomnia, meaning I’m sleepy 24/7/365. I was on stimulants (high doses to stay awake during the day). Had to cut my stimulants in half and finally had to stop them completely. This is what was causing my edema the second time. My mother had problems with edema. I’m not sure if edema runs in your family or not. Something to check into. Also, try cutting down on your salt intake. There is so much salt in products nowadays. I’d try that to see if it makes a difference. It could be it just showed up around the time you started using your CPAP.
Another thing, cutting your humidity lower can cause your eyes to water, etc. I lived in FL for a year helping my parents. It’s humid in FL so I did not use my humidifier on my CPAP. When I moved back to MN, I still did not use my humidifier. It was like I had a cold all the time that first winter back. My eyes were watery, runny nose, etc. I was miserable! Then I realized the air is very dry in MN in the winter because of having to heat the house. I turned on my humidifier and it “cured” my constant “cold”. I now have the humidifier set at 80 all the time. I actually found that I’m not getting my usual cold every year that I’ve gotten every year since childhood. Must have something to do with low humidity.
I’ve never used distilled water in my machine. The person at the overnight sleep study told me it’s suggested but they never used distilled in their machines. I’ve never had any issues with any of my machine in all the years I’ve used them.
I changed to a full face mask to avoid that exact problem. I have very severe Central Sleep Apnea and can’t sleep without my machine. With a full face mask, you can breath through your nose or your mouth. So, if your nose is plugged, you can mouth breath. It might be a good idea to order a full mask next time if only to have one when you need it. I found the Mirage Quattro is a good mask that does not cause blisters on my nose (there are some bad full masks out there). I love the full face mask much better than the nasal because you don’t have to keep your mouth shut while sleeping.
