My name is Rachel Koh. I was first diagnosed with migraine in 1993 with what was thought to be influenza but later diagnosed as an intractable migraine. This was just after I started dating my future husband. From 1996-2008, my pain and attack frequency progressively worsened as my life became more complicated. During this time, I married, got my MBA, had 2 children, and embarked on very demanding career – climbing the ladder in a Fortune 500 company.
During this span, I was seen by a neurologist who specialized in headaches and a pain specialist. I began taking more and more medicines both preventive and abortive, but also increasing the amount of analgesic use (non-steroidal analgesics and opiates) to combat the increasing and persisting migraine pain. In retrospect, this aggressive use of analgesics led to chronic daily headaches which also lowered my threshold for having migraines. In 2006, I was admitted to the hospital for the first time for migraine, requiring continuous intravenous medications.
On a typical day, I wake with a migraine in one of the stages of prodrome, aura, head pain, or postdrome. On a pain scale from 1 (little pain) to 10 (intractable pain), I am usually a 3-4 on my best days. Any variety of triggers can precipitate a full-blown migraine (pain scale 5-10) including changes in weather, stress, sleep, odors, and visual stimulation. Even walking on a bright sunny day or entering a movie theater will trigger escalation. On a good day, I can battle through the day, but by dinner time, my pain reaches a 5-6 and I start counting down the minutes to bed. On top of this, I have sometimes overwhelming anxiety – fearful that this will be the day that I end up in the ER or admitted to the hospital, fearful that I won’t be able to participate in family activities, fearful that I will be a disappointment to my husband and sons. And finally, throughout the day, at any random time, I feel light-headed, nauseated and confused. This is a “good day.” To put it in perspective, last year (2017) was a good year for me: no hospital admissions but 10 emergency room visits. In comparison, between 2009-2013, I was admitted to the hospital almost 50 times for intractable migraine, with each admission lasting 3-7 days.
The first photo is of me on a good day with a pain level of 4. On this day, I was active with family and enjoyed getting out of the house. The other photo of me is with a pain level of 7, which is typical of what I look like most of the time – just trying to get through the day. I don’t have any selfies when my pain level is over that because I am too disabled to even think about taking a photo of myself.
I have tried every known prophylactic and abortive medications for migraines – including anti-seizures, beta blockers, ergotamines, Haldol infusions, nerve blocks, opiates, Botox injections, biofeedback, Cognitive Behavioral Therapy, Diamox, etc. In 2011, I had neuro-stimulator devices implanted and saw marginal improvement in symptoms. In 2014, given that changes in hormones was one of my greatest triggers, and that I was experiencing significant peri-menopausal symptoms, I underwent an oophorectomy and hysterectomy which resulted in some improvement. In 2015, due to the necessity for more powerful intravenous medications, I had a permanent central venous line implanted.
Currently, I suffer 2-3 migraines per week, which amounts to usually 1 good day when considering how long the attacks last. The only medication that is effective for me now is Dihydroergotamine, which brings extreme nausea. Therefore, I need injections of strong and sedating anti-nausea medications. To make things worse, the migraine results in diminished mental acuity and short-term memory loss. 2-3 injections of medications (spaced every 6 hours) are needed to break a typical attack. With each migraine, I am bedridden and unavailable for 48-72 hours. Unable to pick up my kids from school. Unable to shop for groceries, cook, and do household chores.
I receive Botox injections (prophylactically) every 10 weeks and regularly take magnesium but am not on any other prophylactic medication because I have developed severe adverse reactions or they have not been effective.
With all this said, I am hopeful for new medications on the horizon, and with each day, I try to bring more mind-full wellness through acupuncture, yoga, exercise and eating healthy. I embrace and make the most of my good days and try hard to be an example of perseverance for my children.
