Diagram of Chronic Migraine

a) medicated with migraine meds
head, ice crown wrap to numb brain
pain, which is a #8

b) phone nearby, a connection to the
world, support groups, & method to
call family for help, if needed

c) TV remote; I am comforted most
by action movies playing at very low
volume, somehow heroes give me
strength & inspiration

d) family member has put a lovie near
me to let me know they are thinking
of me

e) example of migraine symptom
dysautonomia – my inability to
regulate normal body temperature;
my body is cold, my head is encased
in ice, and my feet are burning up

f) night table mini pharmacy – this
mini pharma keeps me out of the
emergency room, also has lip balm,
essential oils, Himalayan salt lamp,
coke (caffeine helps migraine) & water

Me & my Migraine reading Facebook today…It’s a real bender, a #8. It’s Father’s Day and I’m only able to text my dad. Not able to do anything very special for my husband. Thunderstorms came through this evening. It’s been 2 days since I showered and washed my hair. Just gross and so ill. I’ve been sick so long that I wouldn’t recognize wellness if it slapped me in the face. I move around this life as a sick person in pain. And it sure isn’t as fun as it sounds.

The Photophobia

Migraine is not just head pain:
Photophobia or photo sensitivity is a huge battle…it’s not like: “Oh, hey, it’s bright.” it’s like: “Omg, it BURNS like fire; I’m going to die.”
I developed severe photophobia as I was going episodic to chronic…I noticed I’d be standing outside and couldn’t understand how everyone was not needing sunglasses like I was. What’s happening?? No doctor explained it to me…I researched and discovered it myself. I struggle with photophobia with or WITHOUT migraine. It’s ANY light…and severely in the dark with car headlights, etc. I haven’t been able to open my bedroom blinds in 4 years and it breaks my heart. Just one of the things I don’t love admitting.
Photophobia, phonophobia, aphasia, nausea, dysautonomia, clumsiness, allodynia, extreme lethargy/fatigue, vertigo…the sexiness of Chronic Migraine!
#ChronicMigraine #MAM2019 #sowingtheseeds #MigraineAwareness djk #MyBeautifulMigraine

Advice People without Migraines Have Given Me | Migraine.com

💜”I get how powerless my migraines can make a person feel. They make me feel that way, too.”

💜”I understand that the people really want to help, yet when offered these types of simple solutions, the complexity of my neurological condition somehow feels diminished. My heart beats heavier, and I want to cry out how my migraines are far from simple.”


Sowing the seeds

#ChronicMigraine #MigraineAwareness #MAM2019 #sowingtheseeds #facesofchronicmigraine

Sowing the seeds to me means advocating for, connecting with, and supporting other chronic migraineurs. I was so alone before I found others who struggled like me. I hid and felt like a freak. Finding the migraine community has saved my life and helped me find my voice – for myself and others.

Migraine timeline & frayed nervous system

You can see from the timeline chart how much time can be invested in a migraine. Attacks are easily multi day events. So when considering Chronic Migraine is 15 or more attacks a month, you’re easily losing almost every single day. Prodrome and postdrome phases can be unbelievably debilitating. These are not just headaches, migraine is a neurological event. Chronic Migraine positions your neurological system into a continuous “fight or flight;” it becomes hypersensitive.
I remember realizing this was happening to me in ~2010.

While working as a nurse, my coworker would call to me to get my attention. It would often startle me (I felt like a cat jumping, clawing into the ceiling, hair sticking on end. Lol).

It was confusing and baffling. A laid-back chick all my life, I had NEVER been so easy to startle. My nervous system was starting to fray and go into a state of constant overdrive. Too many, many migraines.

#ChronicMigraine #MigraineAwareness #MAM2019 #sowingtheseeds
djk #MyBeautifulMigraine

Get. Up.

The war is on! With your own body. And there’s no honor in it, only the grace you gift yourself.
Just kill it; kill the head.

“I can’t do this anymore.”

“You can’t NOT do this. Get. Up.”

#ChronicMigraine #MigraineAwareness #MAM2019

I want to dance!

The Pain is not the worst thing. One of the most disappointing aspects of Chronic Migraine is all the wasted time. Wasted time, like ripped and crumpled calendar days littering my whole world. I can see Life happening, and I want to participate like I used to. Like Scarlett O’hara at the Atlanta Ball, I want to dance! And dance and dance!
I remember participating. I have pictures from the past of me participating in Life! Yesterday, it took 7 hours of dark room/bed and 3 hours of prep with rest to go out on a 1.5 hour dinner date. I can smile. And truly, my heart is happy and I feel overwhelming love and gratitude for those 1.5 hours. Each and every minute is bliss to savor… it’s like a warm ray of sun on your skin when you’re chilled, like the sweet intoxicating scent of orange blossoms on an unexpected breeze, it’s like feeling the caress of fine white sand between your toes when you walk on the beach… Every minute of Life is a delicious delight.
And today… Today, is all recovery from the 1.5 hours, and the weather. But… maybe tomorrow will be a good day.🌞 Maybe! And I’ll be ready!🌞 I will be ready to participate! Please don’t give up on me!
It’s a different life, a different way to live. I was unprepared.

#ChronicMigraine #MigraineAwareness #MAM2019 #speakyourmigraine #sowingtheseeds #facesofChronicMigraine