My Six Year Migraine Report

Good news! After the last appointment with neurology, my chronic migraine is considered in remission! Appointments are now further apart, and we agreed to let the prescription for triptans lapse!

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.

What helped?

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.
~ GlassMind

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.