My 14 year old son was diagnosed with Chiari Type 1 in January of this year. Thanks to his wonderful pediatrician we were able to get a diagnosis with two weeks. However, his headache is not typical for Chiari. He had never had a headache, neck pain or any other Chiari symptom before January. He laid down for a nap and woke up with a headache in what he describes as the center of his brain. It is not pounding, throbbing, pressure, tightening, etc. He said there are no words to describe the pain except that it's something he has never felt before and it's really bad. The headache has not gone away for one minute since January and It varies between 6.5 and 9 on the pain scale. It has incapacitated him to the point that he only attends school a few hours a week and spends most of his time on the couch or in bed. He has been seeing a neurosurgeon who specializes in Chiari and was told that he has a 20mm extension but no Syrinx yet. He does have a little more fluid in his spine than normal (3mm) but the neurosurgeon said that he wants to monitor it to see if the fluid increases. He said he did not want to do the surgery unless it is required for his spine, as his headache may not improve with the surgery, especially given the abnormal pattern. We recently found out that his great aunt also has Chiari, but did not find out about it until she was in her sixties when she had an MRI to find out why she leans to the side a little when she walks. She is 80 now and she has never had any other issues from the Chiari. This makes me wonder if his headache is even related to the Chiari. He has had Two MRIs and a MRA of his brain along with a MRI of his entire spine and no other issues were found. Has anyone else had this type of headache with Chiari? We go back the the neurosurgeon in a couple of weeks for more MRIs and I'm hoping his spinal fluid has not increased, but I also don't know what to do about my son's pain. He goes to physical therapy twice a week, he no longer eats sugar or gluten, his is taking Migrelief, fish oil and vitamin D, we have tried acupuncture and a looking for someone who does neurofeedback. He has also tried over the counter pain killers which upset his stomach and do nothing at all for the pain. I would appreciate any other suggestions you might have.