My first experience with migraine was the result of a scuba diving accident when I was 31. It was concluded that there was nothing wrong with the dive but that my body simply could not adapt to changes in pressure. I would learn just how true that is in the years to come. My symptoms then were unusual, purely neurological—weakness, confusion, disorientation, nausea. I had no headaches therefore it was some time before I received a diagnosis of acephalgic (no pain) basilar migraines. They were daily, mostly upon waking, and subsided over the next year. In the years that followed I had similar attacks, predominantly in the winter and at the onset of my menstrual cycle, but they were manageable with Midrin.
In December of 2008, I received a TDaP vaccination which induced status migrainous. My attacks were far more severe and I got to experience true migraine head pain for the first time. My attacks had evolved and I had them while sleeping. I would have a terrifying nightmare and wake with right sided weakness, slurred speech, confusion, disorientation and crushing anxiety. This is what would soon be known as my migraine aura. The aura would last 45 minutes to an hour and then dissolve into head pain. At times, the headache would last not more than 10 minutes before the aura would begin again. It took about nine months to recover from what I now call the “TDaP Incident”. After the migraine cycles stopped, I was left with permanent visual difficulties. Patterns of bricks and certain other patterns would seem to move, sometimes twisting into imaginary holes that disappeared into the ground creating a strange and vertigo-inducing visual effect as I walked. I have since learned to never look at these patterns. This visual problem is called metamorphopsia and pattern glare. I now know that it is the result of functional brain damage. Other than this, my migraines went back to what they were before, predominantly in winter or at the onset of my cycle.
On November 10, 2010, I learned just how bad it could be. I had an indescribably bloody nightmare (which I would learn are night terrors caused by electrical disturbances in the brain) and woke fully paralyzed on my right side. A friend took me to the hospital and I was admitted for a barrage of tests. In the months that followed, I would have attacks every day some that would cause me to spasm on the right side, some that would leave me confused not knowing where I was or able to recognize common objects. I developed post traumatic stress and began to fear falling asleep. I would see many doctors, including those at Mayo Clinic. Physicians who saw me during severe attacks would be shocked and amazed. Physicians who saw me during less severe attacks would diagnose me with a multitude of psychological disorders including histrionic personality disorder, conversion disorder, pseudo-seizures, generalized anxiety disorder, and somatoform illness which only contributed to my feelings of hopelessness and despair. I developed blood clots in both arms during this time as my blood vessels collapsed consistently due to chronic dehydration. The clot in my left arm stretched from armpit to elbow. I thought I would never be well again.
Prior to this, I had been a full time student and was prepping for grad school. I had been recently published and was looking forward to a new and prosperous career. Once sick, I had to leave school and begin to live on the money I had reserved for graduate study. Soon, that money would be gone and I would be faced with bankruptcy and foreclosure. I was and am a single parent with no family. I was a terrible weight on my two adult children one of whom has a baby of her own and my teenage daughter still at home was fully reliant on a mom who couldn’t even feed herself. My friends slowly disappeared from my life as I became more and more housebound.
Eventually, I was diagnosed with “complex hemiplegic migraine” and after being on an eight month waiting list, I got in to see an excellent neurologist at a university and research hospital about an hour away. My physician is kind, compassionate, and respectful. She has confirmed that I have further functional brain damage as it is likely that during those first months I suffered a migrainous stroke. Although I have permanently lost some sensation in parts of my right side and have some permanent visual problems, with physical therapy I have regained the ability to walk without a crutch and can even ride a bicycle and drive on my strong days. Even with current therapies including Verapamil, magnesium, riboflavin, and a heavily restrictive diet, I still have attacks every day but they are usually small. My head pain is not usually severe. The aura which still incites altered consciousness and intense fear remains my biggest problem. I almost never have night terrors (although most of my attacks are upon waking) or spasms or attacks of full-on paralysis but I am not afraid to go to sleep anymore.
I don’t know what the future has in store, but I do know this—on my well days which are far fewer than those I spend sick, I am happier than most other people I know. I enjoy the tiniest of pleasures. I think if you only have ten dollars, it’s worth it to spend five on fresh daisies. So of course I always smell the flowers, the wind, feel the sun on my skin and appreciate that it is wonderful just to be free of pain and to be lucid. I am still alone so when I have attacks, I must endure them alone but then my daughter will come visit with my new grandbaby, or my son will share with me his newest art project, or I will watch my teenage daughter take first place at yet another taekwondo tournament, and I will remember why I endure.