I've been trying to take in as much as I can through all of your experiences. One thing I keep seeing is headaches and the left side pain. Is it always the left side. All of my headaches are on left side and always pressure behind the left eye and that never goes away. All the pain I have is on the left except the stiffness and pain down my back.
Initially I had pain only behind my right eye and right side of my head actually, but recently it is not discriminating anymore, the headache goes both sides, sometimes one at a time, sometimes both (yay, all the lobes get to play the pain game! lol) Yesterday it felt like someone actually drove a spike through the top left of my head but it went away quickly. But you can most definitely expect lots of headaches. LOTS. Its the nature of the best. Our fight.
My neurologist told me I could expect the headaches more on that side because of the direction of herniation, so it does have something to do with it apparently. Ask your neuro about it.
Susan J said:
I get pain and headaches on both sides with my right side being my dominant side. My tonsils were herniated pointing to the right side. Not sure if that has anything to do with it??? .