June is migraine awareness month and coincidentally my most challenging month to date. June 1st was my new patient appointment at The Headache Care Center that I was referred to by my neurologist because I had exhausted many treatment options with little to no results. Although this clinic requires me to travel and isn’t necessarily convenient, it is something I have made a priority in my health journey. I had put a lot of promise into this clinic, waiting months to be seen after scheduling and even changing my much anticipated graduation date.
My boyfriend accompanied me and we both were anxious and excited to see what this doctor and clinic could offer me, the suspense was rising. As we walked in we passed a wall of picture frames with patients and a sign that said “Success Stories”. The doctor I had been waiting months to meet came in and talked in detail about my migraine history, development, and patterns of pain. I felt he really listened to me and got a great understanding of my case. At the end of the appointment the doctor told us he thought I have been misdiagnosed, he believed I had something called Hemicrania Continua.
Hemicrania Continua is a very rare condition that seems to be under diagnosed. I recommend that if you are like me, where results have been minimal to treatment and medications that you go to a specialist and explore more specific diagnosis. Don’t accept the low quality lives that chronic illness can leave you with, advocate for yourself as a patient and make sure your doctors understand and address your individual concerns.
The doctor said he would be able to diagnose me if I responded to a medication called indomenthacin after about two weeks of taking the medication. It could be considered a successful trial if I didn’t need the help of triptans to get me through the week. We left there with high hopes, feeling that maybe this was the answer for me. We got in the car to drive back home and excitedly called my mom and some friends, everybody felt this was finally my break. When we got home we researched Hemicrania Continua more and it brought tears to my eyes because these symptoms were very accurate to what I was experiencing. I went into the indomethacin trial cautiously optimistic, but mostly anxiously hoping that this was the answer to my prayers for my life back.
Unfortunately I needed triptans regularly throughout my trial, even though I was making a conscious effort to avoid triptan use. I resisted treating migraines at their onset and often my migraine would grow to be unmanageable with my home medications. Severe migraines persisted almost everyday that week and I was increasingly disappointed with the lack of results from the indomethacin trial, and what this meant for me in the long run.
June 9, After being bed ridden and in severe pain for two days, I went to the emergency room in the middle of the night with one of the worst migraines I have ever had. I was throwing up uncontrollably in the car on the way and as they checked me into the ER. After treatment in the ER wasn’t successful the neurologist recommended admitting me. The doctors explained that they felt they would be able to break my migraine cycle with DHE infusions, administered by IV. Advising me against more pain medication because simply treating me for my current pain would likely only mute the migraine for a few hours. I ended up staying at The University of Missouri Hospital for an entire week after the DHE infusions proved to be too much for my heart rate to handle. Several other trials of medications were done, including magnesium IV drip, pain and anti nausea medications around the clock as well as fluids because I was severely dehydrated. After a week of little progress I was sent home with a new medication regiment that was pretty intense and instructed to follow up with specialist at The Headache Center.
My mom and boyfriend are an incredible support system; however I was pretty down and feeling hopeless even with their constant encouragement and presence. The three of us drove to the clinic together the next day, June 17 and I had my second appointment at the clinic. This time the doctor took a different approach and treated me for rebound headaches caused by medication overuse. I was instructed to use Frova in decreasing dosage in order to break this cycle. It was a pretty miserable week not treating migraine episodes but in time I was starting to feel at least some relief and functioning more than I have in months. I started the month July with Botox number 5.
Although the month of June was a struggle for me I continue to actively seek out effective treatments, advocating for myself, and pushing through the pain. Even when my spirits have been down, I focus on maintaining a positive attitude and not feeling sorry for myself. I hope that sharing can help someone fighting a similar battle and give some encouragement.