My Six Year Migraine Report
Last updated: September 2023
My diagnosis journey
In 2015, I first experienced migraine with head pain. It was severe, terrifying, and felt life-threatening. These episodes grew to 20 days a month. I was diagnosed with chronic migraine with aura and episodic migraine without aura. Medications were failing me.
In 2019, I saw a neurologist. They added the diagnoses REM Sleep Behavior Disorder (RBD) and migraine without headache. I started medication for RBD and new ones for migraine.
Since 2019, the number of migraine flares steadily decreased to 3-4 per month. Most treatable without triptans! I do still have daily migraine symptoms. Just the flares and days lost are much less.
Sleep: For 42 years, I slept 4-6 interrupted, restless hours a night despite all efforts. Now, I sleep 8-10 hours a night quite soundly. It feels odd to sleep so much. Yet, the nights I forget medication, I sleep just 6 restless hours and get a migraine flare later that day.
Treating RBD also reduces sleep subluxations, thus reducing waking in pain. More sound sleep (according to neurology and physiatry) leads to higher environmental tolerance: lights, sounds, scent, etc. Better sleep = a more relaxed nervous system.
Awareness: It seemed like everything lead to flares. I ignored early signs. Using the Migraine Buddy App helped me identify factors and early signs. Now I am cautious and respectful of factors, prodrome, and aura.
I do everything to avoid flares. I say “no” to flashy movies. I say “yes” to slow days if sleep was poor. I say “yes” to medications, rest, or naps at the first sign of prodrome or aura, even if away from home.
What is still a struggle?
Pain and stress: The higher either of these (even good or fun stress) the more likely a migraine flare follows. I work to minimize both, but they are inevitable.
Every choice I make considers migraine. Life is less stimulating than in 2015. Every trade is worth every low symptom day. I’ve found beauty in slow life. It’s a good life.
Postscript: I wrote the above yesterday. Today I am in a migraine flare triggered by exercise and a vestibular test then worsened by trigger point massage. Alas. Still, I am happy it has been 9 days since my last flare.
Are the family and friends you will be seeing this holiday season understanding about migraine?