I get such bad headaches that I literally sit in the dark under covers and cry. The crying seems to be the only the thing that helps.
I joined hoping to get help for my son. It is heartbreaking to be in so much pain. I am trying to figure it out for my son. Let’s keep each other posted if we find anything that helps below is what I posted in several groupsHi my name is Eileen, I have a 14 year old son that has autism and is non verbal. He has suffered with horrible head pain. He would insert his fingers in his ears and cry. His pain starts with touching the back of his head. After a few seconds he will cry in pain ,close his eyes and start punching the back of his head (the occipital part hard) his left eye moves in and he sticks his fingers in his ears. For years they dismissed these bouts of pain as “autistic behaviors” I finally had an MRI done and they found a cavernous angina on his right temporal and a chiari formation. They perscripted Topomax because they believe he is having migraines. The intensity has reduced but he is still having ties episodes multiple times a day. Its isolating to us and him. He is extremely sensitive to having his head touched. This year the teachers charted that during these sudden stacks he can hit his head as many as 200 times. He is in a contained classroom but I had to fight to keep him in the school he is in. The teachers are worried about the attacks. After doing alot of research I think what he has is occipital neuralgia. The Topomax isn’t doing much I plan to call the neurologist tomorrow and ask for something for the occipital issues. I realize that alot of the neurologist don’t have much experience with this so I was hoping to get advice on what prescription drugs, alternstive treatments and doctor recommendations you might feel worked. Thank you
1 Like
If his head pain is that bad, you need to go to a neurosurgeon that treats Chiari & see if he needs surgery. No amount of medication in the world will help if the opening to his spinal cord ( the go amen magnum) is clogged with brain tissue( the cerebellar tons
I was having technical difficulty. The foramen magnum if it is filled with brain tissue from the cerebellar tonsils clogging it will cause horrible symptoms. somet
Good luck to you & your son. I hope you get answers.