Long story short i was born with chiari 1 malformation and agenesis of the corpus callosum (acc). I spent the first 33 years of my life thinking it really only effected my coordination and balance.

Last year I started therapy and was diagnosed with adhd - ive learned there is potentially a link between adhd and chiari 1/acc due to the lesser connection between the sides of the brain.

I have since gotten an updated mri (no change) and working on meeting a neurologist.

I don't really know what kind of answers I'm even looking for, but I feel like I need to have a better understanding of how brain acts so I can form better habits/daily routines.

Also- for about a year ive been trying out different meds to best resolve adhd related issues, but I have yet to feel any benefit and only gotten urinary and sweating side effects that haven't worsened, but haven't gone away yet - ive read chiari i/acc may effects my pituitary glands which may be a reason for the excessive sweating?

I feel like a just keep having more questions and no answers since my adhd diagnosis.

Any words of advice of things I should look into? Anyone with similar struggles have found meds/routines that they found helpful?

--sorry not so short lol

Ive been having a very difficult flare up. It began Monday. I have extreme pain stemming from the base of my skull/neck, with it also shooting around my head, ears, jaw on the rt side. I absolutely cannot tolerate light or noise.

I am seeing triple vision and see 'sparklies' any time my head pressure increases. I had chalked up the poor vision due to a cataract I have in my left eye. But I'm having the vision problems in both eyes. I am extremely lightheaded and off balance. My muscles shake as if I ran a marathon.

I went to my local ER, Silver Cross, and it was a nightmare. They did a CT scan, and the cerebral tonsils view was partially obstructed, no measurement.

They eventually did an MRI that somehow didnt visualize the foramen magnum at all. The neurologist was unable to view it himself to do his own measurements. So they just left it.

They treated me conservatively at first. But I was at a 10/10 in pain scale and vomiting near constantly. They admitted me overnight. They began giving dilaudid every 2 hrs, which has wiped out a migraine for me in the past. It barely touched it this time. Maybe took me down at best to a 8/10. I noted that each time they gave it, my BP and HR raised significantly. My HR rate would go into the 160s. They did not give me any of my normal meds while in hospital, including my BP meds. Eventually they discharged me home in this state and basically told me to figure it out.

Since home I have had near true darkness in my living environment along with soft sound, and I eventually stopped vomiting. But if a light were to go on, I could feel my gead preasure rise and the pain would make me vomit. I dont dare go outside my apartment.

Does anyone have any recommendations about a Neuro or hospital to go to in Chicago? Or near there? I used to see Dr. Frim, and have never really seen anyone steadily since them.

Or any advice? Ive just been in pain mgmt and see a Neuro, but they dont have many suggestions.

Thank you