My Roller Coaster Journey With Chronic Migraine


Hi there my lovelies! Hope you all are doing well and staying safe. I wonder if I ask you to virtually raise your hand if you have/are suffering from chronic migraine. A lot, I guess. I am rising my as well. However, my relationship with migraine has been a wavy one, full of ups and downs. I involved all stages of grief. Now, I have learned to leave with it. However, does it have to be like this? Why do I have to learn to live with migraine, and make it a part of my daily life?

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I have been suffering from chronic headache since I can remember. However, if you are a desi person, (someone from the South Asian background), you know that chronic headache is only seen as an excuse to get out of school or doing homework. I always heard nice try, you still have to do your homework and go to school. Hence, began my daily struggle to live my life without the support I needed. To be honest, it was the 80s and 90s and there were not much awareness about chronic migraine in my culture.


When I went to high school, my struggle increased, I guess triggered by the chronic stress of adolescent high school life. My pediatrician gave me Tylenol and Naproxen to take, though my stomach did not agree with that choice. Imagine constantly going to the nurse’s office either because of chronic headaches and cramps. My life became a prisoner of chronic pain. I was finally diagnosed with tension headache and was just told to use painkiller, and that was the beginning of my struggle with gastroenterological reflux disease or GERD.


In college, I was diagnosed with fibromyalgia, I know one more pain diagnosis. I was put on muscle relaxant and anti anxiety medication for my anxiety, along with painkiller for my headaches and cramp. I remember, I was always told when the doctors can’t come up with anything they give it the name fibromyalgia. Being in my early 20s, I was keen to what other people’s opinion, and I decided to go off my medications. Yes, I was non-compliant with my treatment because I did not want to be called a hypochondriac. I did not want that extra attention.


In my late 20s, after decades of struggle, I was finally referred to a neurologist, who ordered a MRI exam. At that time, I was more naive and did not disagree with the neurologist’s decision. The present me would have said no, because my current self do not believe in low-value care,  “[s]ervices that provide little or no benefit to patients, have potential to cause harm, incur unnecessary cost to patients, or waste limited healthcare resources,” and contributes to over $345 billion annually in wasteful health spending in the United States (stay tuned for more on this). Long story short, I had my very first MIR exam, with a somewhat false positive result.


The very first MRI of my life showed a possible Chiari Malformation, in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Well, imagine the reaction from my desi parents and family. I started getting all these visits from my aunts, uncle, all worried. My dear lovelies, I love my extended family who are very supportive and caring, but imagine my mindset at that time. Being in public health, I naturally had to go online to PubMed, a National Institute of Health website with peer-reviewed articles. With anxiety, chronic pain, and everything going on at that time, I was dealing with the possibility of a brain decompression surgery.


I had to go through another more detailed MRI, which showed that my tissue did extend into spinal canal but it was borderline. I did not have Chiari Malformation, and I did not need a brain surgery. The moral of that short story is that low-value care only leads to unnecessary treatment, the potential for harm (mental harm in my case) and wasted healthcare spending. I was put on medications, Topamax (the zombie drug), more muscle relaxant.


My dear lovelies, after few years of treatment, no relief and struggling with constant brain fog, I had a new neurologist, my current one. He took me out of the zombie drug, put me on Botox treatment every 12 weeks for chronic migraine along with monthly anti-CRP medication known as Emgality. It is a new class of medication approved as a monthly subcutaneous treatment (or self-injection) for the prevention of medication. Here I am today, getting Botox, monthly injections for my chronic migraine and am still suffering from migraine. My migraine has landed me to the emergency room, and urgent care, and even hospitalization several times. My hair has a life of it own, very painful t touch or brushing.


Nevertheless, I am in peace with my life now but I will not stop fighting. Chronic pain cannot take me down. As I have mentioned before, I am in a state of zen, I am not done though, I will continue to find the relief I seek. At this point, I am looking into eastern medicine for relief. I am thinking of acupuncture treatment for relief from chronic migraine. Mindfulness meditation and deep breathing have helped me reach my zenful self. Eastern medicine so far has given me the mental strength to face my struggle, acknowledge it and peacefully continue my search.


My lovelies! Have you struggled with chronic migraine? How has it affected your daily life? What worked for you and what did not? Have you used acupuncture for chronic pain, and if yes, has it work for you? I would love to hear about your experience, good or bad. Once I go through acupuncture, I will update you on my progress.


I may be in more pain than ever before, but I am in better mental state. I am in a place more grounded and centered. What a difference that makes! My mental peace has made a huge difference in my mind, but I have not given up. I will continue to find the relief I need for more migraine free days. As my favorite poet Robert Frost said, “and miles to go before I sleep, and miles to go before I sleep”. Hope your life if filled with good health, zen, and love. Please stay safe and health.

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