Timeline of Migraines
I have my first migraine in the summer of 2018. On a random day in June, my head starts to hurt. It’s on the right side of my forehead and it feels like someone’s pounding on my skull. It’s intense and unexpected. I’ve never had a migraine before. I walk around my house wondering what’s happening.
Hours into it, I call a nurse friend and I describe my symptoms to her. Stabbing-like pain on one side of my head. She tells me it’s likely a migraine. I should take some Ibuprofen with caffeine. I did not know then how often I would come to rely on that trick.
Migraines and a diagnosis
For the rest of the summer, the migraines keep coming. They happen in sporadic clusters then not at all. In retrospect, I notice in photos from July that swelling starts to form under my eyes. But I will not realize it in real life for another two months until I see the swelling visibly apparent under my eyes on Labor Day weekend.
During the diagnosis process, my eye doctor orders an MRI to see if anything is wrong with my brain and to see what was going on with my eyes. While there is nothing wrong with my brain, the swelling around my eyes is very apparent.
A few months after I found out I have thyroid eye disease (TED), the swelling settles in with my eyes, and the migraines go away. I am dealing with a bunch of other problems with my eyes but migraines are not on my list of concerns. That is until they are.
Timeline of my migraines and my thyroid eye disease
Almost two years into my TED journey, and over a year and a half after I had my last cluster of migraines, they come back with a vengeance. On another random day in June, in the summer of 2020, I have my first migraine again. Then I have another and another.
I get them more often than not for months on end. But, with the return of the migraines comes another change, my right eye begins to change its appearance. The bulginess begins to fade along with the swelling and my eyelid begins to drop. For the first time in years, it sort of resembles what my eye used to look like.
The migraines continue and the swelling changes. By winter, the swelling on my right upper eyelid has completely changed shape and my lid continues to drop. The migraines plateau then fade out again.
By the following spring, the migraines return, only they are on the left side of my head. They are painful and at moments, unbearable but I begin to slowly see changes in my left eye. Not as significant or sudden as my right eye but over time, the change in my left eye becomes more noticeable.
With progress comes pain
Today, my migraines are few and far between. I have the occasional flare-up and a few days of cluster migraines that can be quite annoying but they never stick around for too long these days. My eyes appear more normal than they have in years. With progress comes pain but with patience comes rewards.
After seeing a doctor, how long did it take for you to be diagnosed with TED?