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1544075 tn?1296026498

Awake and Asleep at the Same time - Please Help!

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.
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620923 tn?1452915648

  It may be a seizure of some sort that the EEG will help determine hopefully.

I know my NS said that Chiari can affect us in that we could develop sleep issues such as sleep apnea, and insomnia....and I am also aware of those with Chiari that have developed seizures both b4 and after surgery for Chiari.

Many of us have been put off by Drs who do not see how to connect all the symptoms we have and see they really are connected, it takes a special Dr one that does research in Chiari to know how and which conditions are connected.
Helpful - 0
1544075 tn?1296026498
Hello,
I have had tons of MRi's post op and my neuro doesn't have a clue or understand.  Before the dreaming started I was laying down, as I have to do most of the day, and not felling tired at all but started getting this strange tingling/lightheaded feeling on the top of my head then blacking out.  I am having an EEG done soon and I don't know if this is associated with the dream stuff as it all began around the same time.  I think I may have Occipitoatlantoaxial instability as my symptoms get a lot worse when sitting up.  I have suffered from Chiari symptoms for years and learned I also have Ehlers-Danlos so my cranial joints might be causing the pain.  
But I don't know what the sleep stuff is or why it is happening and I cannot find anything related to EDS or CM.  Other than that all my other symptoms have been treated with meds for years and I am disabled and unable to do much at all.  Trying to find more answers to help with my quality of life, but no one seems to have an answer other than I suffer from the symptoms due to EDS and CM and I just have to cope.
Helpful - 0
620923 tn?1452915648

  Hi and welcome to the EDS forum.

May I ask, do u also have sleep apnea?

What did ur Drs say about the symptoms u r having? And last did u have a MRI post op?
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