Have Your Migraine Attacks Evolved or Changed Over Time? - Part 1

Last updated: March 2022

We asked our contributors a series of questions during Migraine Awareness Month. We asked, “Have your migraine attacks evolved or changed over time?” and here's what they had to share.

The timeline of my attacks changed

Sarah: "My migraine attacks are cyclical, which I’ve actually started viewing as a good thing because they do not respond to treatment. Some years, they are constant — symptoms exist from the time I wake up until I go to bed, without ceasing. Other years, there are short periods between attacks of maybe eight hours or a day or two. Every once in a while, I get a break, and the attacks become, very briefly, episodic. At that point, I’ll get maybe one or two per week."

"There appears to be a very specific timeline for this cycle and these changes, but I’ll have to go through the cycle one more time before I’m sure about it. At least now, however, when I go into a truly intractable period of constant attacks, I know that — eventually — it will pass. This makes it so much easier to cope."

My attacks became more severe

Lisa: "My migraine pattern is constantly evolving. In my childhood and most of my teens, my attacks were occasional. They started as 'neck-aches' and came mainly with light sensitivity and allodynia. I remember telling a teacher my hair hurt. I would try to ignore the pain or would lie down and sleep it off. In my twenties, the attacks started to become more severe. Steady head pain turned to throbbing pain, and I started to get other symptoms such as food cravings, dizziness, and fatigue. The attacks started to bleed into the next day, and I would have occasional rough patches where I'd worry they wouldn't stop - but they'd always clear up."

I went from episodic to chronic migraine

Lisa: "When I was 27, though, they started ramping up even more and I had the most painful and severe attack of my life. It lasted for about a week and included extreme dizziness, brain fog, piercing pain, light and sound sensitivity (my ears hurt because things sounded so loud), and periods of very low emotions. At that point, they turned chronic and I had attacks daily or near-daily for a stretch of about half a year, and was chronic for about one to two years (it's hard to tell exactly when I switched back over officially since it was gradual). I also went through a period of dizziness and vertigo where it felt like I was on board a ship (ahoy, mateys?). Since then my attacks have decreased and I've even had migraine-free periods of a month or two. The severe attacks are a few times a year and the moderate and mild attacks are monthly to weekly. I also picked up another type of headache, called occipital neuralgia, along the way."

I've started experiencing aura

Katie: "Yes, my migraine and symptoms have evolved over time. I was diagnosed at age five with migraine with aura. At that time, I remember the visual aura looked like a dragon. As I grew older, my aura is now a crescent moon shape with zig-zag lines. At age 30, I became chronic. Now it’s rare for me to have an aura since migraine is always present. But when I do get an aura now it means I will be incredibly incapacitated for days."

I've started experiencing olfactory hallucinations

Katie: "I’ve noticed that because I am chronic, I have learned to listen more to my body, so I think I am more aware of the changes in my body that are attributed to migraine disease. I experience olfactory hallucinations - which is a fancy way of saying that I smell things like cigarette smoke, burning tires, or trash that isn’t present. Sometimes I double-check with the people around me to see if the smell is real or just something I am smelling. It’s a dead giveaway that in the few days or even hours, I’m going to get hit. Occasionally, I will have numbness and tingling on one side of my body that I’ve never had before. I monitor it closely and have discussed it with my doctor."

Stay tuned for part II of the advocate answers to this question!

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