Turning on a Dime: Migraine and Unpredictability

A common frustration shared in many accounts of life with migraine, is the true unpredictability of when an attack may strike. Sure, keeping food journals, avoiding certain environmental triggers, and medications may work, but what about for those times when uncontrollable weather changes strike at a moment’s notice, or a migraine attack comes as a total surprise, with seemingly no single cause? These moments have been described by some of you as “the most frustrating part of this disorder". We asked you, the community, to share your stories or weigh in on the fear of the uncontrollable with migraine. Cancelling plans, losing friends, disappointing others, and not feeling understood were common sentiments shared by many of you.

On Making (and Cancelling) Plans

“I am afraid to make big plans because I’ll have to cancel if I get a migraine attack.”

“I can SO related to what you are saying! I hate to make plans because it seems like every time I do, God laughs and I’m down with a migraine.”

“I can’t tell you the number of times I have had to cancel plans due to migraines. It makes me feel like a social outcast.”

“I wish people could understand that we don’t WANT to miss out on things or cancel at the last minute.”

“I hardly ever make plans anymore. If something comes up and I feel well, then I go, but no more concerts or plays or anything I can’t cancel at the last minute.”

“Whenever I have an event, I always say ‘contingent on how I feel’, not everyone understands.”

“I am a spin instructor and had to cancel all my classes at risk of messing them around last minute due to a migraine.”

On Your Support System (Both Good and Bad)

“I’ve already had damage to my friendships because of people that just don’t understand I’m not making this up.”
“I’ve lost friends and family due to this neurologic, painful, genetic disease. Lost touch, couldn’t keep up, cancelled many plans and appointments, no shows, missed important deadlines/due dates, tardy/late, hurt feelings.”

“With family members, I struggle making plans or making them understand that I simply cannot make a pre-arranged date… which is frustrating for them and myself and in turn, guilt raises its ugly head. It’s a no win battle!”

“It’s been the most frustrating thing to train my extended family that when I make plans with them they need to always assume it’s a “let’s see” or not definite. Some really understand, but others are so obstinate with plans and schedules they act as thought I’m just being difficult or dishonest.”

“This part sucks because it’s usually your family! Yes, they understand, but you still feel like you’re letting them down no matter what they say!”

"I have talked to my good friends and family about why I don’t make commitments to plans anymore, as I don’t want to cancel last minute. Those that understand will stick around. Keep trying new things to help with your quality of life. It’s all you can do. And appreciate those people who understand.”

“Fortunately, I have a couple of very close friends who go through the same thing, so when we make plans, and one of us has to cancel at the last minute (second), they completely get it and are possibly in the same position.”

“Thankfully, I have a very understanding and supportive husband and kids.”

“I am thankful our family and our close friends do understand migraines.”

On Anxiety, Stress, and Fear

“You always have the thought in the front of your mind that it will ruin your day, especially if you have something fun planned.”

“I am getting married and am scared to death I’m going to have one. I don’t even leave home for long anymore without a small pharmacy in my purse.”

“I can’t leave home without meds, dark glasses, and a hat, and don’t go out much on my own…. usually need a driver. Get to feeling like a prisoner in my own body. Migraine has made my world a lot smaller.”

“I was SO afraid, booking my trip to Cuba. All that money, and my best friend’s good time…all weighing on my having or not having a migraine. It was really stressful.”

“So stressful and anxiety provoking!”

“The fear of failure… letting others down when an attack strikes, especially when you’re out socially and enjoying yourself.

“I live in fear daily of them.”

“I want to be in control of my life again!!”

Thank you all for your incredible thoughts and stories. It is clear that you are not alone in this daily battle!

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