Our Best Advice
Last updated: July 2014
In honor of Migraine Awareness month (#MHAM) last month, I asked my fellow patient advocates here at Migraine.com what their best advice would be to any and all Migraineurs. From great travel tips to staying active and finding acceptance to taking control, this is OUR BEST ADVICE to you.
Car tips: I roll up a hand towel and put it behind my rear-view mirror. This fills in the gap between the two windshield visors so it is harder for the sun to sneak through. For the opening between the end of the visor and the door jamb when the visor is swung to the side window, I use an old fashioned knee pad. This pad fits perfectly on the end of the visor and blocks the sun down the entire top of the
Hotel CFL lights: Nowadays, most hotels use CFL bulbs. I battle this complication one of a couple of ways. I have called the hotel ahead of time where they replaced the bulbs in my room before I arrived. Another option I use is to bring my own safe bulbs to the room. I change them when I arrive and put them back upon departure.
Food tip: Be careful with homemade foods even if you can eat them at home. When I am home, my foods are safe because I only use ingredients that don’t trigger me. At other people’s houses, their dish may look exactly like mine, but they don’t have my safe ingredients and I end up paying for my mistake. Now, I ask what ingredients are in their recipes down to the manufacturer level, I will eat before going out or bring a dish I know I can eat safely.
Find an understanding therapist to help you cope with all the stressors that migraine brings. Seeing a therapist doesn’t mean you are “crazy” or that migraine is “all in your head”. In fact, an empathetic therapist can be your best ally to convince your doctors to take you seriously. Living with migraine is a hard job. It’s quite a balancing act and sometimes we just need a fresh perspective to help us cope.
Be selfish. Unapologetically selfish. It's one of the only ways you're going to get better. Rest when you need to rest. Eat when you need to eat. Say "no" without guilt. Stand up for yourself. You either can be your biggest advocate or your biggest obstacle. Choose wisely.
The A, B, C's of migraine.
Acknowledge. An important step we can take is to acknowledge migraine. Accepting that migraine is a genetic neurological disease can be a difficult task. It is however, necessary to accept this diagnosis so we can move on to educating and empowering ourselves.
Be conscious of migraine. It's important to learn everything you can about migraine. Education will help us become an engaged patient and receive the proper treatment.
Change. This may be one of the most challenging things to do. We may need to make considerable lifestyle changes in order to reduce our migraine frequency and severity. These modifications can include skipping the nightly, after work beer, carrying a water bottle everywhere we go, stop smoking and many other things. These changes may not be easy, but are necessary to help manage migraine.
If we follow the A, B, C's of migraine, we may be able to manage this often challenging condition.
Be wary of any health care provider who says their treatment will definitely reduce your migraine attacks and never, never trust anyone who says they have a migraine cure. These are my golden rules of migraine treatment.
Ethical health care providers are honest with their patients. Instead of promising an outcome they can’t guarantee, they say the approach has helped many patients and it’s worth trying. They never, never, never use the word cure (unless it is to say there is no cure for migraine). My decades of experience with chronic migraine have taught me to respect anyone who says their approach may or may not work, to take any assurance of effective treatment with a grain of salt, and to run far away from anyone who promises a cure.
Every challenge in our lives is an opportunity for growth. It’s also an opportunity to practice gratitude.
I choose not to spend a lot of time thinking about what I’d do if I woke up tomorrow and my life was instantly transformed to a Migraine-free existence. Because I know it’s possible to have an awesome life WITH Migraine Disease, even Chronic Migraine.
Fighting against acceptance is what leads to suffering rather than the symptoms we deal with themselves. If we can find healthier ways to relate to our situation just as it is, we can find some version of peace. And maybe even happiness.
Next time you think you are too busy or too lazy or too tired or too whatever to take a walk, go take a walk. Listen to an audiobook or a favorite album and get your heart rate up. Escape the world of computers and work and work and more work. Just do this one thing for yourself. I promise you won’t regret it.
Here’s the thing I tend to forget when I’m having an emotional migraine low: my loved ones have a rough time with it too. I don’t know why this is such a hard concept to remember. I forget that, though I am the one at the center of this migraine drama, my family and friends have a truly difficult time seeing me suffer. That this illness can be heartbreaking for them too.
I wish I had realized sooner that I am in charge of my health. There is no clear path to take when you have Migraines. Doctors don’t have all the answers. Once I started to do research and made some decisions on my own about how I wanted to approach my care, I felt more in control. Through that process, I discovered that I am my own best advocate. Knowledge is power. Doctors take you more seriously when you know what you’re talking about. No one else is going to do the work for you, no one else can heal you until you become an active participant in your treatment.
As annoying as it is, remember that the unsolicited advice we get from people comes from a good place. Hearing that their cousin or aunt found a miracle cure often makes us roll our eyes. Instead of thinking of how you are going to get out of this situation, use it as an opportunity to educate. How else are we going to combat the stigma of Migraines? One conversation at a time.
What advice would you give someone recently diagnosed with Migraines?
In the past year, has insurance made it difficult to get your migraine treatment?