The three share their experiences with chronic illness and what they have learned about finding really useful treatments.
Year of headache
Anika Salim had a headache in September 2014. It’s not a big deal. She has been dealing with headaches since she was a child. Over-the-counter drugs were usually sufficient to get rid of them.
But this was different. The drug didn’t seem to dent it. Moreover, it never disappears.
After enduring three days of intolerable pain, Salim went to the emergency room. Her headache will go away for almost a year.
“It’s basically like a hammer, someone just hits the hammer consistently every day,” says Salim in her thirties. “When people came in, they had to whisper. The lights weren’t on. There was no TV. That means you didn’t have to do this with a headache.”
Salim had other symptoms. She was sensitive to sound and light. Her face was swollen. On a really bad day, her eyesight was blurry and disappearing. From time to time she lost the sensation and full use of her left arm.
Salim, who works as a federal epidemiologist and lives near Baltimore, knew something was seriously wrong. She was afraid of having a brain tumor, slow bleeding, and a neurological disorder.
“This isn’t a migraine. There’s something wrong with my brain,” Salim remembers thinking. “That was horrifying. I have never experienced such pain before or after.”
Seven months later, in the spring of 2015, a neurologist diagnosed Salim as a chronic migraine with aura. The aura causes a strange light effect produced by the brain. After taking a complete medical history, doctors told her that she was likely to have had migraines for most of her life, including her childhood. She didn’t know that.
But her latest symptom was “uncontrollable.” That is, the doctor could not identify the trigger and find an effective treatment.
After trying various drugs alone or in combination, Salim finally began to feel some relief in August 2015.
For the past five years, she and her doctor have been fine-tuning her treatment. Salim learned that collaboration is one of the most important keys to finding effective remedies.
For example, when Salim found it difficult to treat regular migraines at the beginning of her menstrual cycle, her doctor noticed it. Together with Salim’s obstetrician and gynecologist, they focused on a plan to adjust her estrogen levels before her period. Salim’s pre-menstrual migraine was used to knock her out for over a week. Currently, she usually recovers in 24-48 hours, but she also uses other treatments.
Not all doctors, even headache specialists, have sufficient motivation or knowledge to try hormone therapy for migraine. Such teamwork is one of the keys to effective migraine management, says Salim.
Joseph Coe thought he was handling his condition pretty well. Kor has been managing migraine attacks and treatments with the help of a doctor since he was 14 years old.
Still, after all those years, he began to notice new patterns: migraine Mondays.
At the beginning of the week, 35-year-old Kor couldn’t understand why migraines burned more often than on other days.
Doctors and friends have suggested that it may be stress from work. But Kor loved his work and was looking forward to Monday. In addition, stress theory could not explain why the incidence of migraine tends to decrease as the week progresses.
In fact, he only noticed Spike when he traveled. Kor was also enjoying it.
He carefully wrote his activity in his diary and finally found a common connection, coffee. To be more precise, there is too little caffeine.
Kor tended to reduce coffee on weekends and on the go. Too much of it turned his stomach upside down.
“The neurologist and doctor I work with told me that caffeine causes seizures, so you probably need to reduce or eliminate caffeine from your diet,” Global Healthy education. And says Coe, director of digital strategy. Living Foundation, a New York advocacy group for people with chronic health.
However, his migraine diary showed a clear pattern. Within a day or two of reducing coffee, Kor developed migraine headaches.
“I’ve noticed that if I don’t maintain the same amount of caffeine every day, I’ll have migraine attacks,” says Ko.
Caffeine, like many other aspects of migraine care, is complex. It can also trigger migraine headaches. However, caffeine can also be a cure (an important ingredient in over-the-counter migraine medications).
Kor’s advice to others with migraines is to try whatever works and open your mind. Everyone responds differently to different treatments. Coe has tried to avoid light filtering glasses, massaging, heat, ice, rest, and noise and light, among other approaches.
“I actually put my head in the freezer once to get relief.”
According to Ko, the most important thing is to pay attention. It continues beyond the first few months after diagnosis. Your migraine headaches may evolve, your daily routine may change, and you may always notice something new about your condition.
For those who really don’t know what a migraine is, Kor seeks more understanding and help.
“I think many migraine patients feel that migraine headaches are different,” he says. “They are too stressed. Or you know, maybe you should try yoga or do this or it.”
Even if you don’t have migraine experience or expertise, you can still provide sympathetic ears, Ko says.
Testing new treatments
Elizabeth Allant’s migraine began when she was six. Despite her age, and unlike many people in this condition, Allant was diagnosed almost immediately.
“I’ve been very fortunate to have been able to consult a neurologist from both a pediatric neurologist and an adult neurologist since I was very young,” said Allant, a 38-year-old Phoenix nurse. I will.
Symptoms of Allant included head and abdominal pain (abdominal migraine), nausea and vomiting. At first she managed pretty well with the drug.
But when Allant hit her early teens, her headaches reached more than 15 days a month (chronic migraine), and her drug sumatriptan (Imitrex) no longer seems to be strong enough. was. Allant and her doctor couldn’t figure out how to stop the torrent of migraine attacks.
Finally, they tried something strange. Salim increased the injection dose of sumatriptan to twice daily for a week. The usual treatment protocol is less than 3 times a week.
Under the guidance of a neurologist, Allant followed a twice-daily dosing regimen for a few migraine cycles. done. As she broke the constant migraine cycle, Allant returned to the lower limit of her medication.
Success taught Allant that her doctor was a valuable resource. Ask them a lot of questions. Rely on their expertise for your benefit. And always follow their instructions.
“If your doctor prescribes a particular dose, there’s a reason,” says Allant.
Do not cut the pills in half just because you are not sure about the symptoms. Unless directed by your doctor, use the full amount prescribed as early as possible for a seizure. At the same time, be careful not to exceed the maximum number of doses per week.
“Since I was a kid, I knew there was always a big concern about rebound headaches.” This limits the number of days you can use the drug. For certain triptans, this can be within 2 days a week.
Recently, Allant asked the doctor about a promising new treatment she read. An anesthetic called ketamine is delivered by IV nasal drops to control migraine attacks. Ketamine is a powerful drug that can cause serious side effects, and researchers are still learning how well it works.
But for people like Allant who haven’t yet found a completely effective cure, ketamine seemed like a worthwhile opportunity. Her doctor helped her weigh the pros and cons. They carefully monitor her symptoms and manage side effects.
So far, Allant says the drug has been successful.
For more information The latest research on migraine treatment
Tips for living with migraines
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