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The Letter I Needed When I Was First Diagnosed With Migraine

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I want to address you in the proper way, but I feel like in order to do that, I need to address myself. Because, when I first was told I had migraines, there was so much information I wish I had at my fingertips. 

So, in Brad Paisley style, if I could write a letter to me…

(That is also to you — newly diagnosed, finally diagnosed, lacking a diagnosis and surrounded by an entire group of people who will never truly get it.) 

First, I want to let you know you are so far from being alone in this. One in every four households in the U.S. includes someone who has migraines. That’s over 39 million people in our country.

Migraines come about for all sorts of reasons, and you’re going to spend the rest of your life being grilled by the general population as to what is causing yours. There’s really two main categories if you ask me: those of us who are genetically predisposed to developing migraines, and those of us who have experienced a trauma of sorts to the head. But at the end of the day, we all ended up with migraines just the same. 

Your migraines are going to change. They will grow as you grow. Sometimes even a medication will change them in ways you never imagined. 

One day you’re going to look back and notice signs in your childhood or when you were a teenager that pointed towards the diagnosis. 

Fifth grade, I had my seat moved across the classroom so I was right by the window. We thought I needed better light to see my textbooks since I’d been getting headaches. Then we went in for an eye exam and I must have had a migraine at the time because the test was all over the place and I was the only fifth grader I knew with bifocals… I threw those glasses out a few years later and I have 20/20 vision. 

You’re going to come to the realization that this is something you’ve most likely been dealing with for a long time before you sought some sort of medical advice.

Because everyone gets a headache once in a while…

And if you’re like me, maybe your migraines became noticeable alongside puberty. So there you are, picking out different types of birth control, because it is most likely your hormones that are causing your discomfort. Please, if you don’t like the birth control they put you on, ask for a different one, and know that you may not find any headache relief, no matter how clear the correlation is between the increased pain intensity and your cycle.

Here’s the first thing you really need to know:

Migraines are different for every single patient. Not one of us has the same triggers, will have the same reaction to different medications or will respond to normal treatments. 

It’s OK to have your primary care doctor give you your migraine diagnosis, and it’s acceptable for them to treat you. You don’t need to run off to a specialist right away.

They’re going to want to start you off on a medication similar to Amitriptyline, the class of medications that are the first line of treating migraine. There are in fact people who are able to manage their migraines with these less potent medications. You’re also probably going to be given some sort of pain medication to “take at the onset of a migraine.” Please, pay really close attention, because even the labels on your prescription containers won’t lay all the information out for you. 

The most important thing you can do when it comes to your migraines is keep track of them. Eventually, a doctor is going to ask you if you made any changes in your life with various habits. Your doctor is going to ask you about your coffee intake. Your soda intake. Your exercise and eating habits. It took me years into my diagnosis to actually sit down and truly start tracking things in my life. Download the app Migraine Buddy — it helps easily track your migraines, the duration, your symptoms, your pain level, what meds you took or other relief methods you may have tried, along with what triggers and sensations may have occurred prior to the migraine. It even wraps it all up in a nice printable PDF that you can bring to your next doctor’s appointment.

For me, the app isn’t enough, but each of us as individuals will have our own methods for tracking our life with migraine.

There’s going to be a lot of people saying you’re just stressed or that you “just need to take an Advil” or maybe adjust your sleeping habits or, hell, “go vegan…” Let me be the one to tell you yes, and no.

With so many people experiencing migraines, and so many more who have experienced awful headaches, it is no wonder that everyone has an idea for you.

The easiest way to tell if stress is a factor is to pay attention to if you’re getting bad migraines on say, a Saturday. You work all week and finally have a breather? Your migraine may spike up because your brain is allowing it in. The best way to balance the stress factor is to find ways to de-stress, take time for yourself, see if meditation or yoga or exercise works multiple times during the week. 

When it comes to diet, you’re entering the world of “triggers.” Triggers are the things that exist around us that make our migraines worse. Do not confuse them as the cause for your migraine. In case no one mentioned it to you yet, migraine is a neurological disorder — that piece of chocolate that makes your head flare up worse didn’t also screw with your neurons… But pay attention to foods, try elimination diets where you remove a single food group at a time (caffeine, gluten, red meat) and see if you notice a difference.

The hardest thing with triggers is that they can be anything under the sun, so you’re going to spend a lot of time waiting to discover them. You can’t eliminate everything all at once or you’ll never know what was making things worse if you try cutting everything out. 

This same thing applies for medical treatments. They take time, and you should do your best to avoid starting multiple “new” approaches at the same time. Yes, you may be jumping at the idea of throwing all your meds away and starting fresh with a whole new cocktail, while also trying essential oils and a gluten free diet and seeing a chiropractor, but seriously, slow down. 

When you get to the point where you’re trying new treatments, be open to them. Listen to what your doctor is suggesting. Go home and start reading. Google has so much information. See how the treatment has worked for others. Pay attention to the similarity of their case to yours. Someone with multiple conditions may have some horror story about a drug and that reaction may never occur in the average patient. People with bad experiences are always the loudest.

You are going to need to be your own advocate.

Having your journal and your information from your migraine app serves as hard evidence when it comes to the existence of your condition. Prepare for the appointments you have. Being able to decide if a treatment is working for you or if you want to move on to something else is pertinent. And knowing what your next options are helps not only you, but your doctor. If you go in saying, for example, I’ve read a bunch about Botox and based off of how I’m progressing, I think we should explore this as the next route, it makes your doctor’s job easier and helps you feel as if you’re really a part of the decision making process. 

If you don’t like how a doctor is responding to you, or if you feel like your concerns are being ignored, go get a second or third opinion. Ask for a CT scan. Ask for an MRI. Go get your eyes checked. Go have your sinuses looked at. The sooner you can eliminate the odds and ends, the easier it will be.

You’re going to run into no answer and no success more often than you like. You’re going to be frustrated and angry.

You’re bound to have to change aspects of your life. There are some things you just won’t be able to do anymore. Depending on how much your migraines interfere with the life you knew, you’re probably going to lose some good friendships and relationships. You might have strained relationships with family, especially if you still live at home or start missing family events like Christmas or birthdays.

There isn’t a cure for this condition, but don’t let anyone stand in your way from trying what you think may help. Let people turn their noses up to your essential oils or your CBD products. It’s OK if people think you’re “crazy” for seeking out a traditional Chinese practitioner to try various herbs and acupuncture. 

Don’t be embarrassed when you need to reach for your medication, even if it’s just nausea medicine. Don’t allow yourself to get in the mindset that you’re letting those around you down. If you can’t make your coffee date, try thanking the person for understanding. Getting in the mindset that the people in your life understand your condition and are OK when you need to rest will be a huge help to your mental health. And it’s OK to remind your friends that even though you can’t always make it, you always appreciate and welcome an invite. 

Your journey is going to be long.

It may last the rest of your life.

You may find the perfect recipe to help manage and even mostly eliminate your pain. 

You may find out you’re allergic to medication. 

At the end of the day, you’re going to realize that there’s a large population living with a chronic illness. You’re going to find people who share your story. You’re going to find a large variety of coping mechanisms. Some healthy, some not. Hopefully, you’ll find a community where you can express yourself and feel comfortable.

You’re going to find your tips and tricks.

You’re going to have good days and bad days. Take in those good days, you’re going to need those memories a lot more on the bad days.

You’ll reach the day that you break, but remember the wise words from Mr. Hemmingway: 

The world breaks everyone and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of those you can be sure it will kill you too but there will be no special hurry.

Be strong at your broken pieces.

Getty image via Yijing Liu

Originally published: February 28, 2019
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