“Do you still get migraines?”
I am reaching, but I fall
And the stars are black and cold
As I stare into the void
Of a world that cannot hold…
There is no anchor. There is no foothold. There is only Pain.
If the “cure” or “advice” is in the form of a cute graphic with picture, it’s almost certainly bull shit and offensive. But people care; they think about you and they want to help …are desperate to help and fix. And that is a blessing.
It’s supposed to be the other way around.
When a medication doesn’t work for me…it’s the medication that fails me.
So why do I feel like the failure?
It was supposed to work… the studies showed… the data showed… it is supposed to work, preventing migraine.
Topamax, Zanisimide, Cymbalta, Effexor, Prozac, Nadolol, Verapamil, Candasartan, Pristiq, Vibryd, Protriptyline, Gabepentin, tizanidine, hormones, herbs, steroids, vitamins, supplements …failure after failure.
My heart is broken. I’m sure I am broken. The grief is so real. This disorder is so real.
I have botox with my neuro in a couple of days and I’ll have to talk to her about stopping Aimovig. I believe it’s made my migraines worse …I hurt and struggle with fatigue all day long. I believe it’s made me gain weight. I can’t believe how much I hurt. And I don’t want to.
There are 2 more CGRPs newly released that I can try. But I’m too weary. And I’m too sad. I need some grieving time …and hopefully I can recover.
I own 10 out of 14 of this list. This is not a happy list; it’s bloody ridiculous.
It was a different life when from age 6-34 my migraines came every 1-3 months. I could “take the day off,” unplug from life, rest & recover and be back in the running in 24 hours.
Then…something shifted. And I’ve spent years analyzing what exactly happened and discovered… nothing. Chronic is a card some people pull from the deck, like cancer, brain tumors, and other stuff I can’t think of right now.
Anyway…there’s no real “unplugging” from life when one migraine morphs into another… when 28 out of 30 days are days I spend slipping around the pain scale and pushing through my 10 symptoms (plus aphasia).
I want to live this precious life. Be a mother and wife. See my kids’ performances and games, go on nature outings, work, be a nurse (be an anything), help others and volunteer, clean house, cook meals, decorate our home, not spend thousands on medical, and never take another pill for the rest of my days.
It’s so conflicting: on the one hand, I don’t want to miss a single second of this life – a single new song, a chance to dance, a conversation with my child, a kiss with my husband. On the other hand, I’m so miserable and feel so useless and worthless, I don’t shrink from death – I believe there are no migraines in Heaven – I would see my family free of my chain around their lives.