Let me start by saying that migraine patients have a much easier time accepting helpful tips from people who have proven to be supportive. Some people have earned the right to ask about our migraine health and to share what they have heard. We know these people care, want to learn, and have a sincere desire to see us healthy and migraine-free. It bothers us a lot more when strangers or unsupportive “friends” offer unsolicited advice. It’s a matter of personal boundaries.
So, if your friend has migraines, chances are good that your comments and questions are welcome. However, we do have bad days when we just don’t feel like explaining, educating, advocating, etc. This especially goes for those of us who are more public about our condition. Sometimes we need to hide in the dark silence of our “migraine cave”.
What can our supporters do or say? It depends on how our day is going, so the first thing I would suggest is to check in with us by asking, “How are you doing today?” and follow that up with, “Are migraines giving you trouble right now?” because you know our first response is likely to be, “I’m fine” even if we have a raging migraine attack with nausea and light sensitivity that’s been throbbing for hours.
Assuming we are having a relatively good day, it’s probably safe to say things like:
“I want to learn more about migraine. Is now a good time to ask some questions?”
“I heard about that new migraine treatment on the news. What do you know about it?”
“Dr. So-and-so says that migraines are caused by ________. Is that true? What do you know about this?”
You see, most of us have been forced to become experts on our own condition. With a shortage of qualified headache specialists, only a lucky few are getting really good care. We seek each other out, subscribe to medical research journals, and scour the earth (and the Internet) for information. If you are just now hearing about a new treatment, chances are very good we’ve been following its development for many months, if not years. Take Cefaly, for example. I have friends who were buying it from Canada long before it was FDA approved in the U.S. I watched videos demonstrating the use of the device and explaining its pros and cons. My neurologist and I decided it wasn’t for me because most of my migraine attacks occur on the side and back of my head. Cefaly is applied only to the forehead, so I won’t be purchasing one.
It was the same thing with Zecurity, Botox, GammaCore, and so many others. When it comes to getting news about migraine research, we don’t watch network news or read popular magazines. We subscribe to Medscape, The New England Journal of Medicine, Cephalalgia, and other medical journals.
I bet you didn’t know that a few pharmaceutical companies are hard at work developing the first-ever migraine-specific preventive. Some have even made it to human trials. We still don’t have our own medicine though. For right now we are stuck with hand-me-downs from cardiology, other branches of neurology, and psychiatry. Every one of us is anxiously awaiting the arrival of our very own preventive treatment. Many of us will be lining up to volunteer for clinical trials as they are available in our area. We know you want to help. It’s just such a waste of time to constantly explain to people that we are much better educated about our condition than Dr. Oz, Oprah, or the 6 o’clock anchor. So, if you want to help, here are some ideas that will really make a difference in our lives:
- Avoid wearing perfume or scented lotion when visiting with us.
- Avoid smoking anywhere near us. Blowing your smoke in the other direction just isn’t enough.
- Let us drive (so we can control the smells, volume, etc.)
- If you smoke, use incense, or air fresheners please don’t be offended if we don’t visit your home. We love you and want to see you. We just don’t want to be sick for 3 days each time we visit. Please be willing to come to us or meet us somewhere else.
- When cooking for us, please ask about food triggers. Most of us react poorly to MSG, artificial flavors, artificial colors, artificial sweeteners, artificial….you get the picture. We can also react to citrus fruits, bananas, hot dogs, lunch meat, sausages, cheeses, and certain spices. All-natural is your safest bet.
- We may decline your offer to see a movie if it’s 3D or has lots of fast-moving scenes as these can trigger attacks.
- Understand if we wear sunglasses indoors (especially at stores). The florescent lights really bother us even when we are not experiencing an attack. Some of us may also wear earplugs to dampen sounds.
- Help us make a quick, graceful exit if we tell you that something is a trigger.
- Plan for frequent breaks. We need to stay well-hydrated and keep our blood sugar up.
- Recognize that we may appear to be taking a lot of medicines. It is unlikely that we are using narcotic pain medicines though, as they tend to make our condition worse. Most of us use a combination of prescription medicines and vitamin, mineral, and herbal supplements. We are not “junkies”. Each pill is carefully chosen. Most of us have discussed our treatment regimen with our doctor and have his/her approval.
- Be flexible. Our lives are carried out in “maybes”, “ifs”, and “hopefullys”. Spending time with us means joining us in our world.
- Believe us. If we say we are having a good day and take a few risks, then just go with it. We’ve been living with this condition long enough that we know when to push the limits and when to use caution.
Thank you all for taking the time to care enough to learn more about what we need from our friends. We love each one of you!