Pirate

I've never had a CSF leak, but I've had many patients who do. None of them ever describe their headache as "mild." Usually they're pretty severe. However, I do have chronic, low grade headaches from dysautonomia. Nothing seems to touch them and they usually last 3 days before they go away. I agree with looneymom...a headache specialist may be your best bet to control them. Good luck.

I've only left the house twice in the last 1 1/2 years without compression stockings. The first attempt was a disaster, but I was not well controlled at that point. I was taking Midodrine when I tried it the second time. It went better, but there was clearly a difference. When I'm really symptomatic, I'll wear an abdominal binder in addition to the compression stockings. That makes a big difference, but it also makes me nauseous, so I limit that only to times when I really need it. So in my opinion, both stockings and a binder are helpful, and when used in combination they are very helpful.

Hopkins does not have a specialty program in dysautonomia for adults. Peter Rowe is at the children's center at the downtown campus, so there may be some services available for the pediatric population. Reportedly, nobody on the current neurology staff has a clinical interest in dysautonomia. That being said, it is a major teaching hospital with many staff changes (interns/residents/fellows graduating and moving into their own practices; new attendings joining staff). There may be an isolated doctor here and there that has some interest in the topic, but it would be a hit and miss situation to find them. It is certainly one of the best hospitals in the world, but like anything else, it has its strengths and unfortunately dysautonomia treatment is not one of them. FYI, I was diagnosed by a cardiologist (EP specialist) at Hopkins Bayview and was very happy with his managment of my situation.