My Headache Story

After a lifetime of chronic Migraine, complicated by chronic Cluster Headache, Tammy finally finds relief at age 45 and devotes her life to Migraine and Cluster Headache advocacy.

Episodic migraine headaches

my journey to a miracle

In honor of Migraine and Headache Awareness Month, the National Headache Foundation is providing a voice for the over 42…

I had my first migraine the year I graduated from university, 26 years ago. I had no idea how they would affect my future or how severe migraine disease can be, or even that migraine IS a disease. I had been a full-time student for 17 years and was ready for my “life to begin.” I had just returned from an epic three-month trip to Europe that I had worked very hard and saved money for, working part-time at a bank while also attending school full-time.

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.

I was diagnosed with episodic migraine in 1994 and had the disease mostly under control until 2013 when the disease became intractable.  I lost 7 months of my life to it that year until a medical leave helped restore some normality to my existence. In June of 2016, this insidious disease once again began to wreak havoc in my life and by September of that year I lost my job and livelihood.  I became chronically intractable once again only this time I also acquired several co-morbid conditions including — but not limited to — major depressive disorder with suicidal ideation, anxiety, vertigo, dizziness, syncope, dysautonomia, tinnitus, nausea, vomiting, medication-induced anorexia, aphasia, short-term and near term memory loss, extreme heat and cold sensitivity, hemiplegia, ocular disturbances including hallucinations, cacosmia, allodynia, phonophobia, misophobia, and a host of other symptoms.  

At the beginning of 2013 my migraine patient community was fairly small. It was me and my best friend. It was okay. I hadn’t thought too much about stigma or disease burden or anything, but these things were starting to wear on me none-the-less. I had a baby and insurance issues and I was struggling, and my best friend was little help as she was suffering her own major challenges in life. Since I didn’t work, I volunteered, and at the time I volunteered in the cancer community, which is a pretty organized community. I began to wonder if that model could be brought to the migraine world. I wanted to try, but I figured I couldn’t do it alone and I didn’t want to recreate efforts that had already been done.

A Cluster what? Picture yourself in a boat on a river, With tangerine trees and marmalade skies.

Chronic pain and migraines are an isolating medical condition. One of the most important things that I have found to help me with this sense of isolation is connections within the migraine community and within advocacy groups. I know how difficult it can be to reach out to others for help and support, but this has been a literal life saver for me.

THERE IS ALWAYS HOPE. Almost five decades.  That’s how long I’ve had migraine disease.

Life with migraine is like living on standby. Standby by nature may be viewed as negative, like the standby passenger all disheveled after sleeping 3 days in the airport. But standby is also one who is ready to deploy, jump into action, and last but not least – a person that is available especially in emergencies.