No REM sleep

I have had a number of sleep studies done. My AHI is 57 and I never had any REM sleep. It is only 30% obstructive the rest if Central. I am beyond tired. I will often fall asleep while talking to someone. Suddenly I will realize that I am dreaming. This is terribly unhealthy. My cells are not repairing themselves and my weight has been going up and up. I will go to bed at 10:30 and am fully awake at 2 or 3 AM. I will go for several days like this then I seem to hit a wall and will sleep for most of a day. One hell of a life. Driving is out of the question as I can easily fall asleep behind the wheel. I have a chronic back pain condition not related to this sleeping disorder. On days where my sleep is poor, my pain levels go through the roof. The doctor said that I have an extremely severe sleeping disorder - perhaps one of the worse he has ever treated. I suffer from just about all the symptoms of sleep deprivation. He has prescribed modafinal to help keep me awake during the day (400mg a day). This is horrible. I wonder what caused this. I have a bi-pap machine which I wear every night. I often sleep walk and talk in my sleep. I now have narcolepsy or some form of it. It is embarrassing to fall asleep while talking to someone. Suddenly I will be talking funny. Like I said I wonder what caused it.

Back in 2009 I fell and fractured my skull. It was a simple trip on some carpeting and I fell backward and hit the back of my head on a very hard floor. I also had an intercranial bleed. I have no memory of 2 weeks and was altered the entire time. (it has never come back) However that was 9 years ago and this sleeping disorder has been around for only about 5 or less years. Any suggestions? I'm beyond desperate. the thing that worries me is that it is central (meaning that my brain forgets to tell me to breath).

Other people even friend simply don't understand what suffering this has caused me. I would love to hear from you folks even if just to receive some encouragement and to find out if anyone else has it this bad (or perhaps even worse) thank you!

Welcome to the forum.

Let's start by getting more information because without it we are just making wild guesses about everything.

Please add your equipment to your profile.
wiki/index.php/Registering_Equipment_in_User_Profile

If unsure...post brand and model number and we can help.
If you can't find what you are using...add it manually to the comments sections...see how I have mine done.

Do you know your exact settings....all of them? If not, once we know which machine we can point you to where you can get the manual so you can figure out all your settings.

Do you take any medications besides the modafinal? If so, what?

When was the last time you saw your doctor about your issues?

You've got a lot going on, but the basics of whether your CPAP treatment is effective is one than can be sorted out here. That's for both the obstructives and centrals. The first step is to be sure and then go from there. If your treatment is subpar, it could account for a lot of your problems. Were you formally diagnosed with narcolepsy, or are you describing your pervasive sleepiness? I ask that because I thought narcolepsy causes increased REM, but then again, I'm certainly not an authority. Please do follow Pugsy's suggestions so you can get down to the business of assessing your data. Maybe you'll find some setting changes could begin to turn things around for you. If you indeed have narcolepsy, there's some good organizations out there helping people manage their disorder and live their best lives.

If you have a ratio of 70% CSA events to 30% OSA events that needs to be treated as a central sleep apnea condition or complex sleep apnea. You say you have a BiPAP machine, but depending on the level of sophistication of the machine, it may or may not be able to treat CSA very effectively. There are more advanced models that may be more suitable. My suggestion is to ensure you are getting the best possible professional medical advice. Do not just accept the advice of so called sleep technologists. They may or may not know what they are talking about. Get serious medical advice, as the issues you describe are not to be taken lightly. Here is a link to a short article that talks about CSA. If you have questions I will try to answer them, but I am not a medical professional, and I am not aware of anyone on this forum that is. I think you deserve better medical treatment than it sounds like you have been getting. A good start is learning about what you have, so you can demand better.

Basics of Central Sleep Apnea - American College of Cardiology

From the sound of it, he very likely has excellent advice, if not necessarily all he needs now re sleeping. Why not wait for more info before shooting off your stuff here newbie?

Ron AKA wrote: ↑

Wed Apr 11, 2018 7:52 pm

If you have a ratio of 70% CSA events to 30% OSA events that needs to be treated as a central sleep apnea condition or complex sleep blah blah blah.

Be aware that Ron AKA is a retired engineering manager and has very little understanding of the limits of his knowledge relating to cpap therapy... Carefully examine everything that he says, and take nothing at face value.