Here is my experience. On Friday April 11, 2012, I woke up at 3am with a bad headache. I could barely move so I stayed home in bed. In the weeks that followed I had low-grade headaches nearly every day at school (I'm in college to become a respiratory therapist). I thought I was getting some kind of bug. The term ended May 3rd and my husband and I went out of town for a few days to relax by the pool. Instead of feeling better, my headaches got worse. When I would lay on my stomach, then sit up to turn over, I thought my head would explode. The pain was excrutiating.

On May 11th I saw a Dr who recommended I go to a hospital ER to get a CT and MRI. Instead, I saw a chiropractor and had a few therapeutic massages; he took 2 x-rays, nothing helped. On May 14th I saw an urgent care Dr who prescribed pain meds and muscle relaxers. On May 15th I went to the hospital ER for severe headache and nausea; they started an IV which made me feel better. The Dr told me to take 4 Advil 3x day and to get an MRI if my headaches were not gone in 3 days. On May 23rd I went to my eye Dr for a picture of my eye, there was no papilledema but she said my blood pressure was high. On May 24th I was in so much pain I had to leave class again, so I scheduled an appointment at an MRI clinic for 6:30 the next morning. They diagnosed me with intracranial hypotension and referred me to a neurosurgeon. I missed school all the next week and on May 31st I saw Dr Gore, a neurosurgeon at Providence St. Vincent Hospital in Portland, Oregon, who referred me to a radiologist for a CT myleogram. I continued trying to go attend school, but ended up being taken from school by ambulance to the ER due to severe headache, nausea and vomiting. On June 8th radiologist Dr Roll did my CT myeologram. He asked me to bear down during the CT so they could see where CSF was leaking out. I begged him "no," as that maneuver gave me an exploding headache that would last for at least half a day. He insisted I must bear down to determine where the leak was, so I did. They were elated to discover my spontaneous CSF leak was coming from the T1-T2 area. I had tremendous pain, nausea, vomiting, a weird salty metallic taste in my mouth and throat, fluid leaking out my nose and tinnitus.

On June 11th radiologist Dr Covarrubias did my first blood patch. He told me to take it easy the first day then return to my regular routine. I felt much better for about a week but by June 24th my headache, nausea and vomiting had returned. I could barely crawl to the bathroom over the course of 30 minutes. I begged my husband to call another ambulance, but he said they don't do anything to help me at the ER, so he helped me stay on schedule with the pain medication so I could at least sleep. On June 26th I had my second blood patch by Dr Covarrubias. This time he told me to lie absolutely flat for the next 7 days, which I did. The next day I was very sick with headache, nausea, neck pain and numb legs. By June 28th I was better and finally I was able to stop taking the pain and nausea medicine. I had to withdraw from school and take an additional 2 months off to recover. During that whole time my head felt like wood and I never left the house, but slowly I returned to normal. By the end of August I had returned to school and was resuming my normal activities. I was worried the second blood patch would fail too, but knock on wood, its been 6 months and I still feel completely normal! This is good news for me and for those of you who feel hopeless that you will have to suffer the rest of your life! With the right Drs, a spontaneous cerebral spinal leak can be diagnosed quickly and fixed! I wish you all the best, let me know if there is anything I can do. ~ Julie