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Emily’s Story

Growing up I can remember having “bad ” headaches as a child, but I wasn’t “officially” diagnosed with migraines until I was in college.  It was then that I begin seeing neurologists; once a year, usually, just to check in and make sure that there had been no major changes in my headaches. I would call the headaches at this time “mild and occasional”; I would get them once every few months, and I could take some medications and fall asleep.

I became a “chronic migraineur” in February 2014. My husband and I were in a minor fender bender (no one was hurt) and two weeks to the day of the car accident I awoke with an AWFUL migraine…It was discovered that in the car accident I had herniated a disc at C5/6. I had my first cervical spine surgery in June 2014.

The surgery went well, immediately I awoke from surgery with no headache and no nerve issues…it was considered a success! Less than 6 months later, all the symptoms came back but this time MUCH worse. I had to step away from my career, because I spent most days in a dark room.  It was discovered that the two discs above where I had my prior surgery had herniated. In May 2015, I had my second spinal surgery, this time at C3/4 and C4/5. The next year or so seemed to float by in a blur, I was in constant pain from the surgeries, which had made my upper back and neck muscles to basically turn into concrete. I again was having terrible migraines, debilitating to the point that I barely left the house.

I began seeing a headache specialist in 2016.  I was still having awful daily migraine attacks. He suggested that perhaps, with all the trauma of the surgeries, that I could have some impinged nerves at the base of my skull. In September 2016, I had bilateral occipital nerve decompression surgery. All in all the surgery did seem to help with my daily migraines, but I still just didn’t seem to be able to get them under control. I was seeing an acupuncturist and massage therapist twice a week. I would say at this point I was having a migraine at least several times a week, which was SO much better than before, but still hard!

At this point in our lives, my husband and I decided we needed to try to really start our family, we were 37 at the time.  In the midst of all my surgeries, we had been trying to have a child, but with no success. After my final surgery, we made an appointment to meet with a fertility doctor, who indicated the BEST chance for us to get pregnant was to do IVF. So in March 2017, we went through our first round of IVF, and were successful..we were pregnant. EXCEPT, my headaches seemed to be worsened by the pregnancy. The next 10 months were an absolute blur.  In midst of all this, my husband was presented with an opportunity that we could not turn down, so at 5.5 months pregnant, we sold our house, packed it up and moved cross country to NC. In December 2017 our son was born, I was so relieved. I had been having such horrible migraines while pregnant, I had hoped that once he was delivered, they would subside.

In 2018, I was having daily intractable migraines. I barely left my bedroom, and could hardly care for my newborn.  I began seeing a doctor who could not figure out why I wasn’t responding to any treatment. So, in December 2018 I was referred to an inpatient headache program in Ann Arbor, MI.

This inpatient program, quite honestly, saved my life. I stayed ten days in the program, where they diagnosed and treated a CSF leak (Spinal Fluid Leak); which could have happened during my delivery, epidural or any one of my spinal surgeries.

Today, I still manage 3-5 times a week migraine attacks. I am on daily medications that help lessen the length and intensity. But I have found I am incredibly sensitive to the changing weather patterns in the area of the country we live in, so I am constantly battling that.

I am learning to live within my box. I do not know how long I will be in this box, but I am equipping myself with tools and strategies so that I can better manage the attacks. I’ve accepted that this could be the rest of my life, and I shifted my mindset to one of joy and gratitude. Focusing on serving as an advocate and educating others about this chronic incurable disease.

After leaving the inpatient program, I decided that I wanted to help others in my situation. My hope is that I can help, inspire and motivate others who are trying to manage their migraine attacks.

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