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Sharing My Headache Story with NHF – Jessica

Hi my name is Jessica. I am 25 years old. My Migraines started about 4 years ago when I was driving and all of the sudden, I could not see the road ahead of me. I got an eye exam right away and learned that I had swollen optic nerves, and at that time I had no clue what the doctor was talking about? I received an MRI, a CT scan, an X-ray and they were all fine. I finally saw a neurologist and had a spinal tap. My opening pressure was 38, which is three times the normal spinal fluid pressure. The neurologist told me I had Pseudo Tumor Cerebri, which she explained meant that there was too much spinal fluid around my brain. She put me on a diuretic and told me that eventually I would have to have brain surgery to correct the problem. Since that time two years ago, I have endured 10 spinal taps and one major brain surgery in October of this year. 2010. That Did Not Correct The Problem!

I continue to have headaches and migraines every day. They are triggered by loud sounds, very bright lights, and brushing my hair even leaves me paralyzed. They come on without warning and last for days. And when they are gone it takes me days to recuperate. But when they don’t ease up after three days, I have to go to the hospital and there they relieve the pressure for me–temporarily. I have been to several doctors but with no luck; they all tell me I have a delicate situation. I cry every day, praying that god heals me. There are days I wake up with a headache and cannot move from the bed. I have tried nearly all of migraine medicines available, even those used to treat blood pressure. Nothing much helps; in fact the only thing that does help is a high dose of a narcotic, like Lortab. I had allowed the first neurologist to turn me into a “guinea pig,” to try all the various medications for migraines. My brain surgery was a nightmare. The doctor put in a shunt on my right side of the brain and it does not even relive my fluid. My husband and I are at our wits end with this. Nobody will give me any information on how to consistently or even permanently relieve them, so I don’t have to go to the hospital every three months. My advice to anyone who deals with this diagnosis is to be aware of what you have, and not let the doctors turn you into a “guinea pig,” with the suggestion to try this or that. Please make sure you do your own research on as much as you can, and then try to learn all the information that you can from the doctor, and make sure you feel confortable when about what you’ve discussed and treatment options before you leave the office. It is your right as a patient to get a second opinion.

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