I am a 45 year old female that developed a "thunderclap" headache 18 days ago. All signs point to spontaneous CFS leak ( head pain in forehead, pain that goes up the neck into the head from between the shoulder blades, both relieved by lying supine within minutes to a 1 or a 2 on the pain level. Standing they go to a 7 or 8 within minutes, sometimes taking up to 20 minutes. Hearing is off- tunnel like sound and low level hum that varies in length and intensity. lightheadedness when standing. had nausea- but mostly gone. vomiting- at times from pain. Taste was metallic at the beginning of symptom onset, but has dissipated.
CT on day 3- normal
MRI w/wo contrast -normal (but I can't get an answer as to whether anyone has evaluated it for p-menigial displacement/diffusment
CBC- day 5 normal
EEG day 15- no results yet but I am betting normal is it is a CFS leak.
My neuro told me she has never seen an orthostatic headache, or CFS leak. So am I looking for someone to help us in the Tulsa area. My hubby can take me within 150 miles, but after that it gets much tougher. We are already making a hefty dent in savings, and it is frustrating to me that a way to diagnose it is also the cure. So can you recommend anyone with experience with this (Dr. Hain in Chicago, Dr. Mokri at Mayo-Rochester didn't know of anyone in the area...)