Does anyone with Chiari 1 also suffer from severe sleep issues? I'm sleeping my life away!

Hi, I'm new on here. Briefly, my Chiari 1 and Syringomyelia were discovered 10 years ago at age 41 when I suffered a water tubing accident and blew out my one normal cervical disc (I also have congenital fusions throughout my cervical spine). My only symptoms prior to this were severe headaches my whole life. I did have a discectomy and fusion of the blown disc and with the exception of chronic pain I have managed okay since then. I have many other health issues and it is difficult to know what is and isn't Chiari related. I am a Critical Care Nurse and had to go on disability in 2007. I've been diagnosed with severe sleep apnea for a long time now. It's been difficult to control and about 18 months ago I gradually reached the point where I sleep more than I am awake. The breathing machine I am on is almost like a mini vent. We've been working for a year now trying to get the settings optimal so I don't fall asleep all the time. My sleep apnea is now central as well as obstructive. This month an MRI shows I have a new Syrinx in my cervical spine and I am scheduled for decompression surgery next week. I am praying this will somehow help with my sleep issues. I literally sleep all the time. If I try to read, watch t.v., be online, or pretty much do anything I fall asleep. I don't dare make plans or drive because I don't trust that I can stay awake. My husband is very supportive and has assumed practically all household duties. I want my life back. I sleep sometimes for days without being awake for more than an hour or so here and there. Am I alone? I feel so alone and have run out of ideas of what might be the cause. I would appreciate any input.



I am by no where near as bad as you on the sleep side of things but I also have the syrinx and scoliosis, dont know if maybe these relate to the problem. I have major problems getting to sleep, but when I'm asleep I can literally sleep for a whole day. Its beyond just having a long sleep. I can wake up from sleeping 15+ hours and do nothing more than lay on the bed and then do it all over again. I just have no energy left in me. I havent heard of many chiarians with sleeping problems, obviously the sleep apnea, but still not too many so maybe we're not all alone. I really do hope the surgery helps you and best of luck for a quick and painless recovery!