Jaime Sanders was just a child, barely 8 years old, when a debilitating condition kept her inside from recess and home from school.
“I would get these intense headaches focused on the left side like a sledgehammer was banging on my head,” she said.
The symptoms included a sensitivity to smells and lights and loud noises. A neurologist diagnosed her with migraines, and the condition worsened from three to five attacks per month in high school to intractable migraines every day for three months during a pregnancy with her third child. Certain that something more serious was happening, she scheduled an MRI, which came back negative for tumors.
“I was a bit disappointed,” said Sanders, who blogs about her condition and advocacy efforts. “I was hoping it would be something different because there was not a lot we could do for migraine.”
Over the years, she tried propranolol, Esgic-Plus, Tylenol, ibuprofen and a cup of coffee or caffeinated soda, but the attacks continued and became progressively more severe, lasting longer each time.
When her youngest son was 4, she had exhausted over-the-counter medications and suffered about 10 attacks per month. In 2005, a new neurologist prescribed Depakote (valproic acid, Abbvie Inc.), but Sanders experienced severe trembling as a side effect. She then tried a triptan, Imitrex (sumatriptan, Glaxosmithkline plc), but it “caused a severe allergic reaction where my throat and my nose closed up and I couldn’t breathe,” she said.
Now suffering a migraine at least 15 days per month, she quit her job and tried several other triptans and drugs her insurance would cover, including anti-seizure and blood pressure medications, which either worked for a short period of time or resulted in side effects that she could not tolerate. It was a trying time for her, raising three young kids while her husband worked odd shifts as a police officer. She applied for social security disability, receiving a partial award after four years and a full award after seven years.
In 2008, she developed a new daily persistent headache that filled in the days that she didn’t have migraines. She tried Botox injections (botulinum toxin type A, Allergan plc), but without much relief.
“At that point, I was kind of feeling hopeless,” she said.
She turned to an eight-week class that taught deep breathing and relaxation tools for chronic pain management, but she continued to search for something that could tackle the source of her pain.
“Because my central nervous system was on 24-7 everything else in my body was beginning to hurt,” she said. “I developed new symptoms. Low-grade fevers, horrible night sweats, horrible dizzy spells. I felt like my body was punching me all day long.”
Sanders eventually received a diagnosis of fibromyalgia. She tried muscle relaxers, acupuncture, massage therapy, nerve blocks, but nothing gave her lasting relief until Lyrica (pregabalin, Pfizer Inc.). Her neurologist eventually took her off it due to her increasing depression.
Most recently, she has tried the injectable calcitonin gene-related peptide (CGRP) medications. After failing on Aimovig (erenumab-aooe, Amgen Inc.), she started a monthly injection of Emgality (galcanezumab-gnlm, Eli Lilly and Co.) and noticed a 50% reduction in severity and frequency in the first month and a 75% reduction in the second month before the benefit began to fade.
“My hair is coming out. That’s something I’m dealing with, but that’s kind of insignificant to the pain I am in,” she said.
Combination therapy is what appears to work best for Sanders. Right now, the 41-year-old is treated with Emgality, Botox, acupuncture, massage therapy and nerve blocks, but when nothing works, she goes to urgent care for a cocktail therapy or is admitted to a hospital for three days to receive dihydroergotamine infusions.
“It’s huge that we’re having these new drugs developed for migraines,” Sanders said. “It’s been years since Imitrex sumatriptan. The issue is whether or not the payer or the insurance company is going to want to cover these drugs.”
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