Hi,
I am new here too I have 5 tarlov cysts that cause intense pain and burning. I have lower back pain that radiates into my buttocks, leg, groin and heel for over 10 year. Saw numerous doctors all said they can't find a reason for the pain. I was only diagnosed with Tarlov 1 year ago once the MRI technology improved . It has bee frustrating and depressing since most Doc. don't seem to have a clue and instead of looking into it they dismiss the Tarlov as the cause of pain. Also I have a high tolerance for pain and I don't wear it on my sleeve so in my experience doctors do not take you or your pain seriously if you present yourself well. It seems that if you do not look like a rag or cry, they seem to think it isn't as serious as you say. I too have bad headaches after laying down, I go to sleep without them yet almost daily I wake up with a bad headache. I am very sorry that you suffer but in some strange way I feel encouraged that I am not alone and that this may be Tarlov related.
What do you do for the pain?