Almost 30y with Migraine and Still Treated Like Idiot Junkie by Doctors
I'm never sure where to comment, or when it's an old or new survey.
I've had them for more than half my life (I'm 54). I've tried just about everything. I'm asking my neurologist about surgery next time. I've heard the "once you're pregnant" "once you're not" once you hit menopause" crap -- nothing.
I've been prompted for "Stress" triggers for the last 10 years. It has never been a major trigger, if at all. But I go along, because it's easier.
I eliminated chocolate for a year; caffeine for two to no effect.
Industrial chemicals are a major trigger, especially chlorine and diesel exhaust.
Can't drink any colored alcohol: whiskey. dark rum, red wine. beer. A glass or pinot grigio often helps.
I have a plan, but I've misplaced it. I'm now obsessing because when I want to go, I want to go, and I'm panicking because I don't have a plan B.
One of my biggest triggers is artificial orange food flavor and scent. Give me a Crush or an orange s starburst, and it's going to be a long one. It's ironic factories have substituted a non-toxic cleaning chemical with orange scent.
I have such rage and fury at doctors who think they know more about my body than I do. They like the battle of wills; they're not there to help. They scold me, make me argue when I can barely think, try to trip me up ("How come you've been missing your acupuncture appointments?") Hmm. Because I can't safely drive, or I'll end it all by crashing over a bridge? Or could it be that my first job is to take care of my kids?
Why should I have to "prove my pain" because they ignorantly assume I'm a junkie because I tell them what works and what doesn't. Why have I got my kid with me in her PJs in the middle of a school night?
Sorry for going on. What needs to happen is to show medical students how to treat invisible pain. I wish they'd give me and maybe someone else give a colloquium on pain. Before we kill ourselves. What on Earth are they going to do with the soldiers coming home from war? My daughters are almost marrying age. Knowing the violence, the flashbacks, the lack of impulse control, the lack of pain relief, I think I would do anything to keep them away fro those poor young men. My daughters deserve a whole lot more: they deserve whole men.
There may never be any help for me, but I hope I can help others. I'm a zoologist, pharmacy technician, researcher who can't work; whose family thinks I could give them a better life if I weren't so defective. "Can you just ignore it, Mom?"
I love my family, but I was mistaken in thinking I could have one. Too vigorous kept trying to raise them. I should have killed myself earlier on, and they could have had a normal mother, and my husband would have a normal life. Don't listen to therapists who say "without you, your family would fall apart." They're resilient; they will heal. Because of my mistake they are suspicious of me; I try not to give promises, because I have missed so many. I'm just a stay-at-home mom who's sick most of the time. They have contempt even in my areas of expertise. And all moms are better than me. I wanted so badly to be a role model (feminist, mother, partner, scientist, activist); instead I've become what I've always hated: a pill-popping, Invalid, stay at home mom saying no at every turn to their suggestions for adventure, play (too loud, too bright....). I'm dependent on them and their father. I had the great good luck in finding a kind, compassionate, feminist, playful spouse. He is a wonderful father, and a patient partner when I'm down and out. It is with deepest regret that this wonderful family, and my 3 great stepchildren are saddled with me.
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