CPAP failure

[StacyHayward]

I started a CPAP at the end of October. Boy did that not work out!

My sleep study said I was having 9-20 events an hour without it. When I used it my events were often between 25-77!! Why was using one making things worse?

Also, the mask was making my face numb all day. Super annoying.

the worst was I felt horribly tired in the morning. Almost drunk. Staggering into walls, falling, speaking incoherently.

it improved a little but I was still so tired. By the end of December I was in such a state of exhaustion I was sleeping 18 hours a day and I couldn’t walk. Absolutely no strength in my legs.

Ran blood work, seems to be fine. Stopped using the cpap and started to improve.

I told my neuro I had a crazy theory that the cpap was making me so sleep deprived it threw me into a MS relapse! He said it wasn’t that crazy!

So I’m currently off the Cpap. My walking has improved immensely! Not back to where it was but at least I can walk about half the day. I’m still very fatigued but it’s improving too. And I’m sleeping 6-7 hours at night.

Anyone else have such problems with a Cpap?

[NorasMom]

Wow. No, I love mine, although it constantly tells me that it's not sealed properly. It doesn't help me sleep through the night, but it does help me sleep soundly. I'm so sorry that this happened to you but happy that you discovered the cause. It can be a warning to everyone.

[CatsandCars]

I have no experience, but I'm so sorry that happened to you. Your explanation makes sense to me. I really hope that there are better alternatives for you. ❤️

[Peruzzot]

You might have the wrong sleep device. I've been using a CPAP for about 8 years ago. I've never been any lower than about 20 events per night. But I've been getting reevaluated for something called "sleep central apnea". I'm getting the second part of that study done at the end of February. The sleep specialist said that the CPAP is primarily for sleep blocked apnea which works differently. She said that with the blocked apnea, the throat muscles and tongue relax so much during sleep that airways get blocked, and that is the number one reason for snoring. Whereas central apnea, the brain, for lack of a better word, shuts down and doesn't tell the diaphragm to work, so that the lungs don't get any oxygen to distribute to the rest of the body. You just stop breathing. That requires a different type of machine. I've had as many as 90 episodes an hour. This definitely is one of the reasons why I'm always tired.

[StacyHayward in reply to Peruzzot]

Yes, this is something we are looking at too. Waiting to be scheduled for a sleep stidy at the hospital this time instead of at home.

[NorasMom in reply to StacyHayward]

I didn't even realize that being tested at home was a thing until my daughter mentioned it recently. We have separate "sleep buildings" in my area that are set up like nice hotel rooms. I wasn't too happy with the scheduling they gave me, because I was kicked out promptly at 5 am(!) in the freezing cold with no coffee and no lights in the parking lot, but anyway. They had me hooked up to more wires than I could count. Multiple ones on my head, more on my chest and back. I literally couldn't get out of the bed until they unhooked me. It was an irritating process, but I think it covered so much more than just giving me a CPAP to test out at home, which is what my daughter's doctor suggested to her. I hope you can find something that works for you.