Letter to a Friend recently diagnosed with migraines

First off, I’m sorry. This sucks. Pain is never fun. That said, I’m here, in part to help you fight your brain. And the system.

Now…what do you need to know?

1. Get a neurologist. Talk to your family doctor and see who she recommends. Look up docs in your area on http://www.achenet.org/resources/healthcare_professional_search/ and other headache organization websites. (Note I use migraine and headache interchangeably in this post because I have both. And most docs who are interested in one are also in the other, etc.) Look these doctors and clinics up on the web to find out what their reputations are. Make sure that the neurologist you see is interested in headaches. Headaches are a frustrating type of illness and one that can be frustrating to treat because it’s easy to get discouraged because there’s no progress. A good doctor will see your brain as a puzzle that needs to be solved and will keep seeking solutions beyond the obvious.

2. Buy and read The Migraine Brain. I’ve read a lot of books about migraines and headaches in the past 6 years and this is by far the best. The author made me want to move to Boston so I could be a patient of hers. (And I have a pretty awesome treatment team here.)

3. Keep a migraine diary. These are a simple tool that can help doctors learn more about your symptoms, help you track things like medications and events, and just generally provide more data. (I’m a big fan of having data.) My neurology clinic provides checkbook sized booklets that hold 12 months of data in a calendar form.

Here’s a random month of mine. (The extensive circling is by my neurologist.)

Every day I’ve written a number, my pain level for that day. If it shifts dramatically, I draw an arrow to the new pain level. I record any non-standard meds I took, any procedures I had, and if the headache was odd, I’ll record what was different about it. This has been a wonderful tool, especially when working with two medical teams that have access to different slices of my data. (So this morning when my dentist wanted to know if a drug that I was taking was a culprit in my recent teeth grinding, we could look at dates, not guesstimate.)

4. Talk to people about it. Your migraines can’t be a copout for everything, but my coworkers no longer look at me strangely if I’m wearing sunglasses at my computer or lying under my desk in darkness.

5. Make use of your network. If you know people who have (or might have) been on the meds you are taking, ask them what they thought. Ask them about surprises. (My big one was the numbness in my legs when I took Topamax.) If your doctor is awesome, as mine are, they may be able to help you avoid nasty side effects or at least warn you about them. (Turns out increasing potassium via food, while on Topamax, helps reduce the numbness.)

6. Be patient. Again, it sucks, but most of the meds will take at least 1 month to kick in, and perhaps another 3 months to be able to evaluate. And don’t try to cheat the system by starting multiple medications at the same time, that just confuses things.

7. Recognize that there may be days when you just need to sleep it off. To lie in bed all day and wake up only to eat some food. Preferably ice cream and cookies.

8. Become a detective. Got a migraine today? What did you do differently yesterday? (And then either don’t do it or know the consequences.) I got migraines after several events with strobe lights. Putting it together I could track my migraines way back to middle school, not just prevent future ones. This has changed how I watch movies and means that sometimes I know I just have to cover my eyes and wait for the scene to be over. If I drink caffeine, I’ll pay tomorrow. And the next day. And maybe the next day. It takes a while to figure out these triggers, but paying attention to them helps.

9. Finally (for now at least) and most importantly, realize that you are in charge. Not that this is in your head. (Well, I guess it is, but it’s physiological, not psychological.) But that you are your own advocate. If you don’t like your doctor’s advice, talk to another doctor. If the side effects from the medication have you feeling like your brain is full of cotton balls, tell someone! My team has been more than willing to help me, but I have to ask for the help. And sometimes to demand it.

Here’s to hoping you don’t need anymore advice because your migraines vanish forever. And until then, hugs!

Katie