I feel so cliche saying this, but I never imagined it would be me! I was the one who was rarely sick (except the occasional migraine), and was just getting into the groove of married life, professional life, and just LIFE in general. Growing up I had remembered having “bad ” headaches, but wouldn’t be “officially” diagnosed with migraines until I was in college; after a serious bout of stress had left me unable to see out of one of my eyes and in extreme pain. 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. Where I would most of the time sleep between 12-16 hours straight. When I awoke, I was like a brand new person!
All of that began to change DRASTICALLY in February 2014. All had been going GREAT for my husband and I, we had recently taken a HUGE leap of faith and left everything that we knew for a BIG adventure on the West Coast. We fell in love with Oregon immediately, the people, culture and the OUTDOORS! We both had good jobs that we liked, and were just embracing each day living in what we saw as “the perfect place to live”. February 2014, like I said, was the time when things changed drastically for us.
We had spent an evening out at one of the many wineries in the Willamette Valley, enjoying an early celebration of Valentines Day. Our plan was to go to wine tasting, then out to dinner in town. My husband and I are NOT big Valentines day people, but we decided to treat ourselves to a nice meal that evening. All that changed in single instant… driving home from the winery, my husband swerved to miss something in the road, which resulted in us getting in a MINOR fender bender. I only note this because, no one was hurt, and I was more ANGRY that my car was wrecked than worried about anything being physically wrong with anyone involved. The evening ended with us hitching a ride with some friends, and deciding to deal with the car situation on Monday when we could get a better idea of what was going on. We went ahead with our nice dinner, and even just Ubered home because we had “so much fun” with the whiskey/chocolate tasting course for dessert. We went home that evening completely unaware that the minor car accident would change our lives forever.
It was two weeks to the day of the car accident that I awoke with an AWFUL migraine…I attributed it to stress at work, took some meds and went back to sleep. But 6 days later, the headache, still had not gone away. Fast forward a bit, and I go and meet with my neurologists for a check in, who confirmed that something seemed incredibly wrong. So then ensued a trip to the neurosurgeon, MRIs, CAT scans etc to figure out WHAT was going on. The diagnosis was herniated disc at C5/6. It was putting so much pressure on my spinal cord that I had started having symptoms of neuralgia in my hands and feet and kinda walked like a drunk deer. The surgeon was VERY hesitant to operate on someone as young as I was (I was 32 at the time). But after several months of PT, YOGA, Biofeedback, Acupuncture, etc…it was not getting any better, so 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! Based on my age and how physical active I was, the doctor recommended that I could return to my “regular” activity in 6-8 weeks. I was so excited..I couldn’t wait to get back to running and training for the half marathon I was signed up for in 6 months. BUT…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 throwing up. It was a miserable existence.
So I went BACK to my neurologists, who suspected that the discs above the last surgery had herniated…he was correct! The two discs above my prior surgery had herniated and now were pressing against my spinal cord. I was in EXTREME pain. Nothing short of pain medication or medical marijuana helped to keep the pain and nausea under control. So in May 2015, I had my second spinal surgery, this time at C3/4 and C4/5. THIS TIME , the surgeon that I had, insisted that I was NEVER allowed to return to the lifestyle I had once had. I was to quit running, and all extreme exercises for many years or even for the remainder of my life. THIS was a HUGE blow to me emotionally. Two years prior, I had been an EXTREMELY active person, and now I was told I could swim, water aerobics, or yoga. I became SO depressed.
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. It was SO hard. Hard on me, our marriage, our friends…just hard.
I went back to my neurologists for a check up during this period, and he suggested I get some “trigger point” and occipital nerve blocks from the headache specialists within the office. I said SURE sign me up…at this point, I was basically at the Urgent Care Office at least once a week for a shot of pain meds and nausea meds. I spent my days in sunglasses, in a dark room, just absolutely miserable. My incredible husband TRIED, like really tried to understand, but unless you are walking in chronic migraine shoes, you have NO idea what it is like
The headache specialist that I begin seeing suggested that perhaps, with all the trauma of the surgeries, that I could have some impinged nerves, and he knew a neurosurgeon that was performing surgeries on the Occiptial Nerves to un-impinge them. SO, In September 2016, I had bilateral occipital decompression. 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 acupuncturists twice a week and a massage therapists. I would say at this point I was having a migraine at least once a week, which was SO much better than before, but still…once a week was hard!
At this point in our lives, my husband and I were like, HOLY CRAP we are 37…we need to think about having kids. 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 appt 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, not lessened (as many doctors had indicated could happen).
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. The move was harder on me than I anticipated. I am a fairly positive person, so I just kept trying to make lemonade out of lemons.
In December 2017 our son was born, I was so relieved. I had been having such horrible migraines while pregnant, that I had hoped that once he was delivered, they would subside. But I WAS WRONG!
The year of 2018, I like the call the year Emily completely and utterly hit rock bottom. For anyone that has been there, its a lonely, HARD place. I was living in a new town with no support system, had a new born baby who was very challenging AND a POUNDING headache every single day. I tried everything to remedy the headaches. I tried sleeping more, eating better, walking, yoga..you name it I tried it. I was not until I began seeing a new headache specialists in Raleigh, that things seemed to begin to look up for me.
This new doctor was AMAZING. Like, he listened, ACTUALLY listened. And didn’t just throw a new medicine at me. He wanted to get to the root of WHAT was causing all this pain. By mid year 2018, I spent 90% of my day in a dark room. I was caring for my child, but at the bare minimum. My husband would have to come home at night and take over all responsibility for him, because I was in so much pain I could not even take care of myself, let alone another human. It became apparent that I needed help, so over the next several months, I had a brigade of house guests, who helped me care for my son. I was miserable.
My doctor in Raleigh was trying EVERYTHING he could possible do to help me. He was thinking outside the box, trying experimental drugs, you name it I was trying it. But after several months, we came to the decision that I needed to be referred to an inpatient head pain program that was run out of a facility in Ann Arbor, MI.
This inpatient program, quite honestly, saved my life. When I was admitted, I was a depressed, hopeless human being who was on the verge of ending my life. I know that is shocking, it shocks me to even write it, but I was in SO much pain, i figured that I would be better off if I could just go to sleep. I was a disappointment to myself, I wasn’t able to be the mother that I wanted to be, nor was I able to be the wife I wanted to be. I was not myself at all, a shell of a person riddled with constant overwhelming chronic migraines.
I am going to do an entirely separate blog on my experience with the inpatient program. But the one thing I will say is that it CHANGED my life.
Modern Migraine Mama 