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Sharing My Headache Story with NHF – Robin

I am a 51, almost 52-year-old woman. As a young child, I had chronic daily headaches. I cannot remember a time or day of no headaches. My first migraine was at age 5. I was running up the side of a hill; when I got to the top, it felt like a bomb exploded in my head. Since exactly that moment, I have had frequent migraines. At first, it was weekly. When I hit my mid-teens, they became much worse, and even more severe with my monthly cycle.

In 1976, I had my first CAT scan. Normal. In 1978, I was sent to a pain clinic and was diagnosed with vascular migraines. I tried biofeedback for six months. Since then, I have also tried acupuncture (six months, twice a week), sought help from a dietitian and chiropractor, and had my vision and TMJ checked.

I know what my triggers are, both dietary and environmental. I try to go to bed and wake up at the same time every day. I do not let myself get too hungry. I had a hysterectomy in 2002, due to fibroids and endometriosis. My husband and I have no children, due to the migraines.

Throughout the years and with different jobs and medical insurance, I saw many neurologists. I’ve tried many various prescriptions, too vast to include here. I am currently taking Amitriptyline, Inderal, and Keppra. None of the Triptans work for me. I’ve tried the Imitrex shot, pill, and nasal form. I get all the side effects from the drug, with no benefit, and still have the migraine. I’m also on Vicodin (only 15 per 30 days) and Valium (10 per 30 days).

My oldest sister also suffers from migraines and had a migraine-onset stroke at 48 in 1996.

On May 29, 2005, at 2:30 AM, I woke up from a sound sleep with an incredible, pounding pressure behind both eyes: a butcher-knife pain behind, and cutting through my right eye, with each heart beat.

That pounding pressure has NOT let up at all since. The butcher knife comes and goes weekly. I’ve been to urgent care three times. I’ve had a shot of Toradol, a shot of DHE, a round of steroid prescriptions, a CAT scan, two 50 mg Demerol shots, MRI/MVI, spinal tap, and increased dosages of Topamax.

My neurologist referred me to a colleague of his at UCSD. I saw her for six visits. She tried a greater occipital nerve block. That didn’t work. After the sixth visit, she informed me that she had done all she can do, and that was it.

My doctor then sent me to a pain clinic, where I went for six months, twice a week. I went through the water relaxation, meditation, migraine biofeedback, and Qi Gong. They mostly tried to teach me how to “live with the pain.” I have 51 years of experience “living with the pain!”

A few months ago, I was finally approved to try Botox. My doctor gave me 18 injections and said if it were to help, I would know in about two weeks. After a month, I went back to see him. It did not work, although, my forehead isn’t wrinkled!

This week, I’m on day six of the butcher knife. I called in sick on Monday, went home sick on Tuesday, and am just enduring the pain now. The 15 Vicodin and 10 Valium are gone, obviously. So I try Advil, Tylenol, Excedrin, Bayer, and Aleve. I’m off the Excedrin for now; I know all about the analgesic rebound headache, or medication overuse.

I receive the National Headache Foundation monthly newsletter and keep hoping I will see something in there that will help. This week is very bad, due to the high-pressure and low-pressure weather that keeps blowing in.

Can someone please help? I have HealthNet insurance. Is there a study out there that needs a tester? Can my nerves in my head that cause the pain be deadened? I am desperate for help.

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