How I Became a Migraine Warrior

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My headaches went back to fourth grade.  I remember coming come from school and needing to lay down because I was so tired, and my head hurt.  I now know they were tension headaches. My head felt like it was in a vice grip. My battle with migraines began when I was 19.  I can vividly recall what that experience was like. I remember having to go into my dark bedroom because the light hurt my eyes, the nausea, and being in so much pain that I could not lay my head flat on a pillow.  Instead, I laid forward in a downward dog position. I thought to myself, this must be menigitis! Then the vomiting began. I was sick so many times I literally laid down on my cool bathroom floor for relief. Somehow, I was able to sleep and the next day I woke up completely fine.  I thought, what was that I experienced? I was also dealing with severe allergies and chronic sinus issues at that time. I was going weekly for 3 allergy injections to help minimize my allergy symptoms. I also had sinus polyps that almost required surgery, but a month long antibiotic treatment was finally able to treat it.  During my next ENT appointment, I told my doctor about my new symptoms. The doctor responded by telling me what I experienced was a migraine. He referred me to a neurologist. My new neurologist put me on the preventative blood pressure medication Propranolol and prescribed Axert as my abortive. At that time my migraines were episodic, about 1-3 times a month and mostly around my monthly cycle. After a year or so, the Axert was no longer effective for me.  I went on to try Imitrex, Relpax, then I finally found relief from the abortive Maxalt. While I continued to keep my illness at bay, there was exciting news in my personal life! My wedding day was fast approaching, and I couldn’t help but worry that a migraine would ruin the day I dreamed about since I was a little girl. My neurologist prescribed me a short-term amount of the steroid Prednisone to prevent an impending attack. I made it through the best day of my life and 5 days in Puerto Rico for my honeymoon thanks to him!  Unfortunately, as my migraines began to worsen he retired. I had to find a new neurologist.

    Over the next couple of years, I ended up seeing 2 or 3 new neurologists.  One doctor even told me that what I was experiencing were not migraines, even though the severity of my headaches would often cause me to vomit.  I began to question myself. Wondering if I were exaggerating my pain. In 2009 I tried out for the sport roller derby. This is likely where I deviated my septum and had 2 bulging cervical discs.  It was not until a minor car accident in 2010 that my migraines went from episodic to chronic. I never imagined I would one day wake up in pain and it would never go away. From that point forward, I was now in pain every second of every day.  My constant headaches are located on my left temple and never goes away. When I experience a migraine, those are located primarily on my right temple or in and behind my right eye. The best way I can experience the pain is imagining someone hit you in the head with a sledgehammer.  Then your freshly exposed brain was doused with gasoline and set on fire. The final agony is having a screwdriver stabbed through your eye. There were times that all I could do was lay in a hot bathtub and I would moan in pain. I would look at myself in the mirror, hardly recognizable with tears running down my face.  I would ask God why and plead for him to just take me. That is real, unexaggerated pain.

    I have been diagnosed with chronic intractable migraine (15 or more headache and migraine days per month), cervicogenic headaches and migraines (a secondary illness caused by the disorder of the cervical spine and its component bone, disc, and/or soft tissues), and status migrainosus (especially severe and long-lasting form of migraine that can last more than 72 hours).  Now, migraines were taking over my existence. I was starting to get into trouble for missing too much time at work and had to apply for FMLA protection. I was starting to lose sleep from the pain. I was spending less and less time with my friends and family. Losing interests in activities I once loved. I felt controlled by my own body. My doctor at the time suggested it was now time to try Botox treatments.  They only reduced my migraine by 1 attack a week or so, and I was now having 2-3 attacks per week. My future felt bleak. One day in 2013 I felt I could not continue to live this way anymore. I had no more strength, energy, or courage left knowing another attack is imminent. By that time, I had already been to Urgent Care and the ER for severe attacks more times than I could count. I wrote goodbye letters to my loved ones.  I also began to pray harder than I ever have before. Not to get better, but to be able to cope with this illness that had consumed me. I was able to gain more strength and the will to fight slowly returned. I shredded those letters and decided to put on my boxing gloves to continue the fight against chronic migraine. The pain never goes away, but some days are better than others. I chose to live for those some days and learn to get through the other days.  There was so much more that I wanted to experience in my life. My biggest goal was to one day be a mother.

    In October of 2013, my husband and I began planning to have a baby.  At that point, I had been on Topamax, Maxalt, and Neurontin for years.  My OB/GYN informed me that I needed to go off all these medicines before we stared trying to conceive.  This meant that now when I had a migraine I was unable use to anything besides Tylenol. We all know Tylenol for a migraine is like putting a bandaid on a cut artery.  My dream of one day becoming a mother gave me strength to get through the withdrawal of my medications and the 10 months is took to conceive. My pregnancy was better than I expected!  I had morning sickness for 16 weeks and experienced migraines in the first and third trimesters. The second trimester I was almost migraine free! On December 20, 2015 we welcomed our beautiful, healthy daughter into the world!  We were both overcome by emotion. She was the most beautiful thing we ever saw, and it was a long journey to have this day realized. My labor lasted about 15 hours and it took about 2 ½ hours to deliver her. I was given Pitocin and this slowed my labor down so much the nurses had to turn off my epidural.  That contributed to a very bad migraine while I was in the hospital. Because I was nursing I was only allowed Motrin. Even though the migraines continued, I some how found strength inside myself that I never knew existed. I was proudly able to nurse my baby for an entire year. I was still unable to take my preventative or abortive medicine during the time I was nursing.  I wanted my baby to be protected against everything this world had to throw at her, so I sacrificed my pain for her wellbeing. During the first year I also went through a severe Postpartum Depression. The anxiety was overwhelming. I now had this new life I was suddenly responsible for, when some days I could not even care for myself from an attack. The fear paralyzed me. I worked for months to fight my Postpartum and was prescribed several different anti-depressants and had to see a therapist.  I learned not only to take life one day at a time, but I had to break it down to one hour at a time. The unrelenting pain, anxiety, and insomnia ruled my life for that year. Day by day I was now getting stronger mentally but felt awful physically.

    I started getting new symptoms.  My vision was blurred on a daily basis, and I had constant ringing of the ears.  I also started getting terrible back pain. I shrugged it off from being caused by carrying my baby around.  One night, my pain was so severe I could not stand up straight and began vomiting bile. When I arrived at the ER they ordered a Cat Scan and discovered gallstones.  I was having a painful gallbladder attack. When I met with the surgeon the following Monday he had surgery scheduled for me two days later, on Wednesday because my condition was so bad.  The surgeon advised me that the gallstones were working their way out of my gallbladder towards my pancreas. If a stone fell into my pancreas this would cause a serious condition called pancreatitis.  I woke up with a migraine the day of my surgery. Between the surgery and migraine, I needed five shots of morphine while I was in the recovery room. This was an outpatient procedure. The nurse was literally wheeling me out to the car while I was vomiting bile into an emesis bag.  At the follow up appointment with the surgeon he told me that my gallbladder was gangrene and five times it’s normal size. I realized how lucky I was that I had the surgery when I did, and that this could have easily killed me. After my surgery I had hopes of feeling better.

    My migraines were still 2-3 times a week following my surgery.  I stepped down from my position at work for one that was less stressful.  Now, I had chronic migraines, work, and being a new mother to balance. It seemed like each week, or every other week I had a doctor appointment.  I was also getting chronic sinus infections. The ENT discovered I had a deviated septum and sinus polyps that were causing the chronic infections.  I underwent a painful sinus surgery where I was not allowed any pain medication afterward since I was bleeding so heavily during the operation. The month of recovery was very painful and triggered migraines.  Unfortunately, the sinus surgery did not stop the migraines but did prevent me from getting chronic sinus infection. I decided to find a new neurologist. About the sixth neurologist that I went to, was the first one out of all these years who ran extensive tests to try to figure out the cause of my migraines. I had an MRI and MRA, carotid and thyroid ultrasound, blood work, and an EEG.  The only new information he had for me was that I am pre-Lupus and had low vitamin B. He said my migraines were complex and this was a hard case. I have heightened inflammation in my body but do not have full blown Lupus yet. His treatments ended up being futile as well. I was on 200mg of Topamax at one point, and my brain was so foggy I could not formulate a thought. I would have trouble finding words or would mix them up.  I did not recognize this new person I had become, and I was still in pain. I felt like I was back at square one all over again and that feeling of wanting to give up returned. One day I was driving on the highway during a thirteen day intractable migraine, and was stuck in traffic. I looked at the overpass and had the strongest urge to want to jump to end this nightmare that was my life. I again began praying and told myself I have my daughter and husband at home waiting for me.  I told myself to breathe and stay in the car. This will pass. I don’t know when, but I had to keep fighting. Just then, traffic started moving again. I looked at the overpass from my rearview mirror with tears streaming down my face. I would not let that be how my story would end.

    During that thirteen day intractable migraine, I ended up needing steroids to stop the cycle because it was not responding to any other medication.  I lost vision for five minutes in my right eye. After meeting with an eye specialist, he told me that I risked having a stroke because blood supply was shut off to my brain that caused the temporary blindness.  I knew at that point I needed to be my own advocate and do something soon to get these migraines under control. They were getting worse and worse. I now had vertigo which caused me to fall over on several occasions because it felt like the room was spinning.  I came close to having a stroke and my blood pressure would elevate during an severe attack to a near hypertensive crisis. I was put on blood pressure medicine for a year to keep my blood pressure in check though on normal days my blood pressure was on the lower side.  This often made me feel weak and dizzy. I knew I needed to find resources and fast since my current doctors were not able to combat this disease. I started pouring all my free time into researching migraines and the available treatments. According to The American Migraine Foundation, an estimated 36 million Americans suffer with migraines.  That is more that diabetes and asthma combined! One in four households in America has somebody living with migraines. Though so many people are affected, there is only about 20 million dollars a year allocated to migraine research. This breaks down to about 55 cents for every American with the condition. 260 million a year is the estimate of what is needed.  Donations to research can be made through americanmigraine foundation.org. I invested over forty hours of research and found that Cleveland Clinic offered a Headache Rehabilitation Program. My new treatment plan consists of Botox every three months, Aimovig injection monthly, Maxalt as by abortive, Rubinul and Corgard as my preventive, physical therapy, and speaking with a therapist.  I am also waiting for insurance to approve a DHE infusion that is supposed to stop these cycles. This new treatment plan is reducing the number of migraines I have per month, however I still experience intractable ones. I’ve never felt so empowered and optimistic of my future. I will stand up and try to use my voice to make a difference. My goal for this year is to help bring awareness to migraines, help fight for more research, and help end the stigma that sufferers feel.  Once we lose hope, we lose a part of ourselves. To all the migraine warriors out there, keep fighting!

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