Me or the Migraine
After years of living in pain and a multitude of testing, I was diagnosed with chronic migraine and migraine associated vertigo about a year ago. Like many migraine sufferers, I'm a stubborn, type A, driven person. I've wanted to be a lawyer since I was 16 and I was able to practice law for just under 5 years. After working myself to my breaking point, I had to make a decision: It's me or the migraine. My story may be long-winded, but this is the first time I've sat down and told my whole story. I'm hoping this will be as therapeutic for me as reading others' stories.
The source of my migraine is questionable. While no one in my family has been diagnosed with migraine, genetics of course could be to blame. However, head trauma could also be the culprit. I was a competitive figure skater growing up and had several concussions beginning at a very young age. I remember one concussion in particular when I was 7 or 8 years old where the moment I hit my head it felt like an electrical shock went through my body. My mom always said she knew the smack of my head on the ice was really bad when there was just silence and no scream of pain. This was one of those hits. Regardless of how I ended up with the disease, like most migraine sufferers, I'm just thankful to finally have an explanation for my suffering.
I had symptoms of migraine as a child but went undiagnosed. As a child I would get bad headaches when my blood sugar dropped too low. My mom always chalked it up to possible hypoglycemia. I also had a lot of abdominal pain. My mom would pass me a tums or mylanta, which did nothing to alleviate the pain, and I'd be on my way. While I visited many people in the medical industry for sports related injuries, I never saw anyone for my headaches or abdominal pain. I felt like crap a lot as a kid and was accused of being a hypochondriac. Such accusations lead me to believe later in life the pain was all in my head and that I was a little crazy. It wasn't until I was diagnosed and learned about the disease that I felt the weight of the world was lifted off my soldiers. I remember having an endoscopy in June 2012 because I was having trouble swallowing. When I woke up from the anesthesia and was told the doctor found a ring in my esophagus (likely stress related) the first thing I said was "I'm not crazy."
In December of 2012 the neurologist diagnosed me with chronic migraine and migraine associated vertigo. It turns out that some of my abdominal pain is also likely migraine related. I finally ended up at a neurologist after I was rendered completely incapacitated in late September 2012. How did I cross the threshold to a chronic migraine sufferer?
Like I said, I had headaches and abdominal pain here and there as a kid and through adolescence. However, nothing was chronic. In college I went through a bout of bad heartburn and abdominal pain that was diagnosed as IBS. I'd get headaches here and there if I was too hungry and sometimes when the weather changed, but as far as I can remember such headaches were few and far between. Once I went to law school, things started to change.
Aside from hunger and weather changes, by far and away my greatest trigger is stress. My other major trigger is food related. As an aside, I had the MRT blood test done that tested for multiple food sensitivities and I highly recommend this for anyone with abdominal pain and/or headaches. It is a major contributing factor to changing my life. Now, back to my biggest trigger: stress. I'm an obsessive compulsive perfectionist. No, I don't require everything in the medicine cabinet to be in a specific place and I don't have to lock the door three times, but I do expect nothing but perfection when it comes to who I am and what I do. As a result, I put a ton of pressure on myself and have pretty bad anxiety. Therefore, my personal pursuit of perfection only exacerbates my stress levels.
In law school, the frequency of my headaches began to increase. I also was suffering more frequently from abdominal pain. Once I started practicing law, I would suffer from one to two bad migraine headaches a month. The headache lasted anywhere from a day to a week. Most of the time I would work through the pain. I figured they were just tension headaches. I was a baby lawyer and I had a lot to prove. There was no way I would let a headache get in my way. However, there were a handful of days where I did have to give in to the pain. After two years, I changed to a different job that was initially less stressful and I started to feel better. However, as the new job became even more stressful than my first job, I began living in chronic pain. Not a day went by where I did not suffer from severe abdominal pain and my headaches increased in number and intensity.
At this point, I alerted my boss that I believed something was wrong. Fortunately, my boss was extremely accommodating. I began seeking treatment for the abdominal pain only. Again, I thought the headaches were just tension headaches or possibly sinus infections even though they were throbbing like crazy. I was able to work from home when the pain was too severe and was in and out of the doctor's office for testing. I felt like a lab rat. They found major inflammation throughout my GI tract, but no explanation. I tried medication after medication and nothing alleviated my pain. My doctor chalked it up to stress and diet. That's when I took the MRT test and completely overhauled my diet. It helped immensely.
However, at this point the frustration of not knowing what was wrong with me and having no real concrete answer as to the root of my pain made me a complete psychological and physical mess. I was such a ball of anxiety I cried at the drop of a hat at the hint of any emotion. The inability to control my constant crying was an embarrassment and I feared being around people. While my stomach pain began to decrease after changing my diet, I now had a headache pretty much every single day. However, on most days the headache was pretty dull. It was probably a 3 out of 10. Once a month I'd get the major headache that would last about a week. What's more, I began getting bouts of dizziness. What made me the most dizzy was scrolling through documents on the computer, which I did all day at work. The dizziness started in May or June of 2012 and progressively got worse. I felt sick most of the time and frequently had to cancel my social plans. I hated feeling like such a flake. I had a very social life and now all I wanted to do was lie down and tend to my pain.
In September 2012, another new symptom appeared. Within about 10 minutes after I'd begin exercising my heart rate would become so high I thought I was going to have a heart attack. In addition, I started feeling pressure in my ears and jaw like I was in an airplane and I became disoriented. I constantly felt my pulse in my upper jaw. No matter how hard I tried I couldn't "pop" my ears and my hearing was muddled. These feelings were also accompanied by a horrible headache. Everyone at my office was having sinus infections so I thought it was just my sinuses. One steroid shot and a z pack later my co-workers were nearly back to normal the next day.
Given all the time I spent at the doctors I had been reluctant to go to the doctors office for a sinus infection. However, everything came to a head one day. It was the last Monday in September and I noticed my cognitive capabilities were completely failing me. I was trying to write down my messages and could not form the letters. It took me 20 minutes to try and add 5 numbers together on a calculator. My arm started going numb. I made an appointment at an urgent care to have the supposed sinus infection treated. When I walked into my boss's office to tell him about my appointment I had an anxiety attack. Yup, I was on the floor face down, partially under my boss's desk convulsing. Not one of my finest moments.
I was taken to the urgent care doctor where I received the anticipated steroid shot and z pack. Needless to say, I did not feel better the next day. I ended up having to take a medical leave of absence from work. I could not drive, and I often fell over needing someone to support me when standing. I constantly forgot what I was talking about and was having anxiety attacks nearly every day. I was misdiagnosed multiple times until I saw a dizziness specialist who believed I had vestibular migraine also known as migraine associated vertigo. I began botox treatments for the migraine, which initially helped with the headaches, but not the dizziness. I also started taking xanax, which significantly helped the anxiety attacks.
Feeling better, I was cleared to go back to work. I sought a second opinion for the dizziness and ended up seeing a neuro opthamologist who found that the migraine was disturbing my eyesight. I began taking gabapentin, which initially worked wonders. My symptoms were more or less gone. We thought I was in the clear. So, I began a new job and initially I was doing very well. It was my dream job and I loved the work. However, I was working very long hours and under a lot of stress. Even though we increased the medications, it was clear I was headed downhill fast. My headaches were back, the pressure in my head was back, my cognitive abilities were beginning to falter, I was starting to feel dizzy. It was at this moment I had to make a decision. It's me or the migraine.
I chose myself and my life. I was married in March and it wasn't fair for my new husband to have a wife who could hardly get out of bed. That's not the woman he fell in love with. After much discussion with my family and my doctors, I realized I could not keep working. All the years of working through the pain just made my condition worse. I tried acupuncture, but the needles just further traumatized my body. I'd get a massage and the next day my muscles were in knots. I'm a walking PSA for the importance of managing stress and listening to your body. I hate not working. This has not been easy to accept. I read stories of migraineurs who are working and I can't help but feel weak. If others can work with this disease why can't I? I'm bored out of my mind and to be honest, I'm still suffering. However, I'm down to an average of 2 headache days a week and I usually only get dizzy if something aggravates my vision. I used to exercise vigorously six days a week, but now I have to be very careful with my movement. If it's raining, I will not drive unless I absolutely have to. Windshield wipers are the bane of my existence.
I'm only 31 and I'm not giving up hope on having a career. I have to accept that right now it is not in the cards. Admittedly, some days are harder than others. However, having a diagnoses is empowering. So is reading the stories of other migraineurs. On the days I feel depressed and that no one understands, I remember I am not alone. When I ask myself if I'm just being a hypochondriac, I remind myself that migraine is a real condition. I'm thankful for every single person who puts his or her story out there because each story is healing in its own way and helps me put myself before my migraine.
Have you taken our Migraine In America Survey yet?