Hey Gordon, if you don’t mind me asking: how do you actually manage your migraines day to day? I’ve tried so many things and nothing sticks. It’s exhausting.
Hey there,
I’m so sorry you are also part of what is frankly a pretty terrible gang to be roped into. They aren’t “just headaches” as some people might think. They’re full-on system shutdowns, and they absolutely suck, and you’re right - they’re exhausting as hell.
For me, I like to think, “How can I handle this right now?” Shifts the focus from freaking out to figuring it out. Doesn’t take the pain away, but makes it feel a bit more manageable - like I’m still in the driver’s seat. Because it is pretty terrifying when your own brain rebels against you.
Mine kicked off after my spinal surgeries - probably a mix of nerve trauma and tension from all the hardware in my back is the working diagnosis. I rely on the gang a lot, particularly during some of the worst ones where I’m a sad little squid, lying in the dark with no vision and tingling hands and feet that don’t work and a head and neck that feels like a depth charge has gone off in it.
Get to know your triggers; seriously, it makes a world of difference. If you can figure out what sets yours off, you’re halfway to managing the whole thing. For me, it’s a long list: lack of sleep (guilty as charged), dehydration (yep, me too), what you eat, pressure changes, weather (the absolute worst), illness, exercise, lack of exercise, hormones, stress, screens, bright lights, strong smells… it’s like a never-ending game of “What’s going to get me today?” But knowing the usual suspects can help stay one step ahead.
A good routine of exercise, diet and sleep (mostly) has really helped me, but a good neds regime has definitely been a game-changer. It’s all about having the right tools at the right time - like running a rescue mission on your own nervous system 😅 I take a daily preventative, I’ve got a good emergency kit of abortive drugs for when I first get an aura (triptans are usually the first line, but CGRP are my go to these days and they’re amazing), an antiemetic for nausea as a good sidekick, and there is a looong list of pain meds to try. Supplements - magnesium, B2, CoQ10, some people find they suffer when they’re anaemic too. Acupuncture, TENS stim kits, cold packs, headphones, pressure bands, the little forehead robot that zaps you…
I’ve got a full body TENS kinda kit with loads of pads that can go from my lower back all the way up and over to my forehead, and I won’t lie, the thirty seconds of agony mode is less than pleasant - certain baby brothers enjoy pressing the zap button far too much 🤨 @realrocketboy @thunderbird-3-best-bird
Basically, long story short, don’t feel despondent if something doesn’t work the first time, or you need to switch up your plan. There’s loads of options out there and it’s about layering your tools.
But I think the most important thing is to give yourself a little grace. You’re not being dramatic. Don’t expect to power through, take an aura seriously and stop. You’re trying to manage a neurological condition like a badass, and it’s hard when your own brain is fighting you. Don’t expect to just bounce back from one either. Spoiler alert: I don’t bounce - I kind of… roll awkwardly and curse loudly and usually throw my back out while I do. It’s very graceful 🙂↔️
And you’re definitely not alone, even though I know a lot of people don’t get it. It does get better - inbox is always open if I can help in any way 💛
