I Just Got Diagnosed With Migraine, Now What?

Sometimes the diagnostic journey has many twists and turns. Other times, it is simple. When I was diagnosed with migraine it wasn’t that difficult to get the diagnosis. I told my doctor about my headaches and he asked some questions about the pain location and symptoms. Honestly, I didn’t understand the diagnosis.

My cluster headache diagnosis was a long winding road. The trigeminal neuralgia diagnosis fell in the middle. My SUNCT diagnosis was interesting because I had to find a doctor who knew what it was to diagnose it. For vestibular migraine, one doctor didn’t see it as a big deal. However, another doctor did and got me into physical therapy which helped me. No matter which headache disease you have, the diagnostic journey is only one step.

Did I understand my migraine diagnosis?

Interestingly enough, migraine was the diagnosis I understood the least. I had it since childhood and didn’t see it as a big deal. My attitude growing up was to take something and get back to school, farming, or sports. It was viewed as a nuisance and not as an important health condition. I remember going to the doctor when I was in my 30s and I still thought my only migraine attacks were the severe ones that lasted 2 weeks. I would go to the ER to get an IV cocktail to stop it. Migraine with aura attacks floored me. However, when I started to learn more about migraine, I realized many of my less painful attacks were also migraine. A migraine without aura is still a migraine. They had light, sound, and odor sensitivity and were accompanied by the phases of a migraine attack. They lasted only for a day or two so they didn't seem so severe.

What about my other headache diagnoses?

I was able to understand my other diagnoses more easily. Since I hadn’t been told much about them I set about researching them. I had no preconceived ideas about them. It’s funny how something so common as migraine I blew off as no big deal and knew next to nothing about it. But give me cluster headache, TN, or SUNCT and I’m reading everything I can find to better understand. Most of my research came from organizations that make their mission to educate patients. Clusterbusters and the Facial Pain Association are great examples of patient-centered organizations that do their best to research, advocate, raise awareness, and educate patients and others about the diseases. In the migraine space there are many organizations. I fell in love with the Association for Migraine Disorders not only because of their resources on migraine but also because they have expanded into educating about the many comorbid conditions and other headache diseases.

Were my treatments working?

Once you get a diagnosis, it often comes with a prescription or several. With headache disease, depending on how much it affects your quality of life you may be given preventive medication (a medication taken on a schedule to help prevent attacks) in addition to abortive medication to help stop the attacks. I had no preventive for migraine for many years because in my mind they only happened once every couple of months. Since I didn't give the doctor proper information they never gave me a preventive. I was only given an abortive medication to take when the attack started.
 

How do I know if my medications are working?

How do you know if your life is better with medication than without? While tracking attacks can be overwhelming, finding a way to do so may help you know how much medication is or is not working for you. When I go to the doctor, if I’ve had a decent few days I tend to glaze over the terrible several days I just had.

I try to make some notes to jog my memory. I try to make it simple for me to do, otherwise, I find I don't track anything. Another thing I like to consider is whether the medication is improving my quality of life or if the side effects are overwhelming. For instance, if I have to choose between pain and nausea, I tend to choose to stay in pain to avoid the nausea.

What is my doctor's investment?

My favorite doctor told me, "I am paid the same whether I prescribe a medication or not. I also get paid the same whether you take the medication. So let's find something that works well for you." I have struggled with many side effects from medication. When I report side effects that reduce my quality of life, I often feel unheard. Over time I have gotten better at advocating for myself and partnering with my doctor to find the right treatments for me.