Living with Chronic Intractable Migraine
I completely understand how you feel for those who have found yourselves in the chronic migraine category. There were uncertainties associated with the change in my migraine attacks, but an interdisciplinary approach and lifestyle changes have allowed me a small piece of my life back.
Migraine has always been a part of me
My introduction to migraine attacks started in middle school. Monthly menses were followed by what I called then "bad headaches." The pain would spring on one side of my temples, then migrate to both sides. My mother would hand me two Aleve and send me on my way. Over-the-counter medications were not enough to combat pain; as time went on, I found myself needing to take them more frequently. There were many missed school days and I had poor concentration in class.
Shifting from episodic to chronic
Every year around 25% of people shift from episodic to chronic migraine. Episodic migraine is defined as 15 or fewer head pain days a month. Chronic migraine, on the other hand, is defined as 15 or more days of headache per month, with eight of those days meeting the standards set by the International Classification of Headache Disorders (ICHD)
Migraine has fluctuated throughout my life. In 2017 my attacks went from episodic to chronic to what the heck is happening. Nothing can prepare you for 24/7 migraine attacks with no slowdown. Triptans were failing me, which led me to consume coffee, BC powder, or extra-strength Excedrin daily to get through a work shift. It wasn't until I saw my first neurologist who explained medication adaptation headache.
What to do when your neurologist can no longer help
I was feeling hopeless and depressed, and I had reached my breaking point. No one wants to hear, "There is nothing more I can do for you. I knew I needed to see a headache specialist; however, none were in my medical group. Thanks to clever documenting on the authorization referral, I was cleared to enter the Migraine program at UCLA.
When I would suggest new therapies or pharmacological measures with my non-headache neurologist, I was met with hesitancy or denials when trying new approaches. However, with my headache specialist, suddenly I had options, and the decision was mine. It was surreal sitting across from my physician, who showed empathy and completely understood the complexities of migraine disease.
A new approach
You have to approach chronic migraine disease from different angles: Behavioral, lifestyle, pharmaceutical, and nonpharmaceutical. Dealing with migraine disease isn't easy. There are days when I completely lose it.
Things I have found helpful:
- Daily mindfulness incorporating diaphragmatic breathing. I have found the free Ucla mindful awareness app helpful.
- It is a slippery slope to overdo it. Pacing my day and taking breaks when needed helps tremendously.
- Incorporating aerobic exercise to release those endorphins, AKA natural pain killers.
- A deficiency in vitamin D has been associated with migraine. I aim to go outside for at least 5 minutes a day for a dose of natural vitamin D.
If you find yourself in a similar space, don't give up hope.
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