Reuniting with My Headache Specialist

I got my first migraine as early as seven years old. I was in elementary school with a debilitating migraine that had me vomiting to the point of dehydration – something that all too many of us living with migraine are familiar with.

What was my road to migraine diagnosis like?

Despite the classic migraine symptoms, I was so young that migraine wasn’t first on the list to my family or to my pediatrician. As with any initial evaluation, that must rule out the big, scary stuff first. So, I did the imaging, lab work and all the other tests my doctor ordered. All came back clear – which is a blessing. It can also leave you feeling empty handed. You’re still experiencing debilitating pain, but your medical tests all show that you’re “healthy.”

Because of my age, there was also the initial concern that I didn’t want to be in school. Was I nervous about a test or something? That theory was quickly shut down because the attacks often started on the weekends #letdownheadaches. The pain was obvious to anyone seeing me in an attack that it further dispelled that myth.

When I finally met with a neurologist, he didn’t hesitate to identify it as migraine. He said we typically don’t see them this debilitating at this young of an age, but that’s clearly what she’s dealing with. And so, my treatment plan began.

How has my migraine treatment plan changed?

At some point over the years, I switched to another doctor for her reputation for effectively managing migraine. She was participating in a lot of research and seeing patients as well.

By the time I met with her, I was already on my path of adjusting my diet and lifestyle to best manage migraine. I shared my experience with her and she shared some supplements like butterbur, fish oil, magnesium and feverfew that could possibly help me as well.

Ultimately, we created a prevention plan that included my dietary changes and her supplement recommendations, as well as a rescue plan of medication when I had an active attack. It was such a breath of fresh air to have a doctor collaborate with me like this.

How did my MS diagnosis change my care?

So you can imagine how crushed I was years later when she needed to refer me out to a neurologist. When she first said it, I said, “You’re my neurologist. I don’t want a new one.” All these years, I didn’t realize that she was a headache specialist, not a neurologist, and it didn’t really matter until my MRI results suggested that I had lesions reflective of multiple sclerosis… a diagnosis that was confirmed after a few months of further testing.

This was back in 2016 and I’m happy to say that MS is being well managed, but I did have a bout of migraine attacks kick back up that my MS neurologist didn’t really have an interest in supporting me with.

Two conditions – MS and migraine – although they are both brain related need separate specialists to treat. So, I reached out to my original headache specialist and have an appointment with her in a couple of months.

Although it adds another doctor to my healthcare team, there is part of me that’s relieved and comforted by the fact that I have someone to address each of these concerns thoroughly.

I’m curious to know, do you see a headache specialist now and how has their expertise specifically in headaches and migraine helped you to get a more effective treatment plan?