8 Tips for Dealing With Chronic Migraines: ‘There Is Always Hope’
Key takeaways:
Lindsey de los Santos experienced debilitating headaches for years before being diagnosed with a chronic migraine condition.
She developed strategies for dealing with her symptoms, such as keeping a migraine kit on hand at all times.
She also created an online community dedicated to helping others deal with chronic migraines.
Lindsey de los Santos has been dealing with chronic migraines since she was a teenager.
She knows firsthand that migraines are more than just headaches and that women are more prone to getting them than men.
Lindsey has a debilitating condition with many more symptoms than just a headache — such as nausea, sensitivity to light and sound, and vision changes.
For those who live with constant migraines, day-to-day life can be difficult, and they must find ways to cope with the crippling symptoms.
Lindsey — a 46-year-old fourth-grade teacher and writer from Lee’s Summit, Missouri — is one of those people. Over the years, she has developed a strategy to deal with her symptoms. Here are her eight tips.
1. Avoid migraine triggers
Migraines can be triggered by a plethora of stimuli. For Lindsey, a mother to a 5-year-old and a 7-year-old, everything from the weather to lighting can set off a migraine.
“In my classroom, I changed the fluorescent lighting,” she says. “I researched lights that were more gentle for people with migraines, and I have lamps and use those light bulbs instead. Sometimes, we can make these small changes that can be more conducive or migraine-friendly.”
But Lindsey acknowledges that triggers such as the weather are unavoidable.
“You can’t avoid everything, but I try to avoid the triggers I can,” she says. “I don’t skip meals, and I try to get good sleep. I try to alleviate stress through yoga and things like that. I feel like there are things I can do that are within my control.”
2. Find the right migraine medications
Lindsey’s headaches started when she was 15. She wasn’t diagnosed at the time and just took over-the-counter medications. Later, in her 20s, she began experiencing seizures and was diagnosed with epilepsy. After that diagnosis, her doctors began looking more closely at her headaches and, at age 30, a neurologist diagnosed her with migraines.
Over time, she’s gone from experiencing episodic migraines to chronic migraines. She gets at least one migraine a week.
She went through many medications as her condition progressed, with some working for a while and then becoming ineffective.
Lindsey breaks her medications down into “preventatives” (which she takes to avoid migraines) and “rescue medicines” (which she takes after the onset of a migraine). Both are important for living with migraines, she says.
Right now, her preventives include Aimovig (erenumab), an auto injection of 140 mg once a month, as well as 50 mg of Topamax (topiramate) each day and 75 mg of nortriptyline (Pamelor) a day. She also gets periodic injections of Botox to prevent migraines.
Her rescue medications include a cocktail of metoclopramide (Reglan), cyclobenzapine (Flexeril), and diclofenac, or Trudhesa, a nasal spray. “This is similar to the DHG (dihydroergotamine) migraine cocktail I get if my migraines get so bad I go to the emergency room,” she says.
3. Prepare a migraine kit
Lindsey says she’s always prepared.
“I actually have a migraine kit, both in my classroom and in my purse,” she says. “So, no matter where I am, I have a kit to soothe some of those symptoms.”
Her kit contains ear plugs, an eye mask, her medications, a migraine stick with essential oils, and a card with her health information.
4. Keep a migraine diary
Lindsey recommends tracking your migraines. Capture the date of the attacks, triggers, symptoms, and medications, so you can later analyze for triggers and to determine if medications are working.
While this can be done on paper, there are apps to help, too.
“You can even share that [information] directly with your doctor, or just discuss it with your doctor, and that has been really helpful for me,” she says. “Sometimes, you don’t realize how many attacks you’re having. Or you may not realize what your most common trigger is.”
5. Talk to your doctor
Lindsey says it is very important to have a constant dialogue with your doctor. Migraines are things that can be easily dismissed, she says, so she relies on a trusted doctor to listen.
“You’ve got to tell your doctor how your migraine attacks are affecting your life. They need to understand,” she says. “I’ve had to have this conversation with my doctor — how the frequent hospital visits are affecting my job. My doctor is wonderful. She takes the time and doesn’t rush through our appointments. I also email her through a patient portal, and sometimes the nurse will email me back. But my doctor has even emailed me with tips to talk to others about.”
6. Develop a support system
Lindsey says you need a support system at home and at work.
“Communicate with people,” she says. “Let them know what happens when you have an attack. It is not always visible, what you’re going through. You can’t always see the pain. It’s important to tell those you know. Sometimes we need a little bit more help.”
Lindsey does advocacy projects for the American Migraine Foundation and started a blog to help others dealing with migraines.
“A lot of times I was noticing, being in migraine groups or seeing things on Facebook, that people felt like nobody understood, or they were feeling alone,” she says. “I wanted to create a space where people could find encouragement and support. I feel like it has been really, really rewarding for me. I feel like I’ve gained more than I’ve given.”
7. Don’t give up
Lindsey says one thing she has learned through all the years of migraines is that if one medicine isn’t working, another is around the corner. Keep talking to your doctor and researching. What works for one person might not work for another and vice versa.
“There is always hope and another option,” she says. “I have found that time and time again. Your life is important. Continue to search for what works and know it will get better.”
8. Give yourself grace
Finally, Lindsey says, don’t blame yourself for migraines.
“Your brain is not your fault,” she says. “A lot of people with migraines have guilt because we think we should be able to prevent this or control this. Sometimes you can do everything right and still get a migraine because you get migraines. It’s not your fault.”
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