Hello. I am a 25 year old female with a large Chiari Malformation that was operated on in 2009. I recently was also diagnosed with Ehlers-Danlos syndrome. After my surgery, nothing got better but recently I have been having extremely lucid dreams, when I awake I have shook violently, screamed names, once my husband tried to wake me up and he said my eyes were open and moving back and forth rapidly.
It seems like at some point in my dream I start to wake up and realize I am dreaming, I can hear things in the "real world" and sometimes even see things, but I am unable to wake myself up. I also can feel pain. I start to panic as I cannot wake up and even can hear my daughter in "real life" but cannot wake up to help her. When I do finally awake there is my normal Chiari head pain but like 100 times worse and I cannot move my head.
Any ideas would be helpful as it is terrifying and I am trapped in my dreams able to hear and see the world around me, but the dream continues. I think it might have to do with the Pons being directly in front of my cerebellum which is already too large for my head and any swelling or increased signals crossing from the Pons to the Cerebellum could cause pressure on my cerebellum and spinal cord causing the pain. it's to the point I am afraid to fall asleep.