Photophobia: Living Life in the Shadows
I woke to a bright sunny day. Many people long to wake up to bright, clear days without a cloud in the sky. I used to be one of those people. That was before my episode with chronic, intractable migraine began. Now the light feels like daggers in my eyes trying to pry my eyeballs out. It causes me to have a very hard time focusing on my surrounding or a computer or phone.
The challenges of photophobia
Of the number of symptoms that occur during a migraine attack the most disrupting for me has been photophobia. I went from living my life in the light to becoming a creature of the shadows overnight! I joke with people that I’m a vampire or that I live under a rock. The harsh reality of living with photophobia is that it makes trying to go about living a normal life very challenging.
Sunny days and brightly lit environments
I live in sunny Florida! What a pain that has become for me literally. I feel like some kind of creature of the night on the days the photophobia is bad. Even the unfiltered lights of many businesses are painful including my workplace. I spend the daylight hours trapped inside where I can control my environment. It’s dark, cool and quiet. I eventually venture out as the sun goes down hence the vampire analogy.
Dark sunglasses for light sensitivity
There are days when I do need to leave the security of my home though. These excursions call for a few migraine life hacks. On those days I’m usually donning a hat accompanied by dark sunglasses. There are times the sunglasses don’t quite cut it so then I employ a second layer of protection. If you’ve gone to the eye doctor and had your eyes dilated they often give you a dark light blocker to be used with your glasses. I slip these behind my sunglasses and that helps quite a bit. I even use that set up at night if I must drive to help with oncoming headlights or to help my eyes adjust to the changing light variations. I usually don’t drive during episodes of severe light sensitivity at all.
Asking for accomodations at the doctor's office
At home, I use an eye mask to get by until the sun goes down. They even have masks that provide some cooling relief. I’ve got blackout curtains and adjustable blinds in my bedroom to keep most of the light out. It’s easier to control the environment at home where things are predictable. If I’m out things are a bit harder to control. Frequently store lights are not filtered at all, and ironically many doctors offices don’t have filtered lighting either! My doctors know about my issues with light sensitivity and will leave the lights dimmed or off until they come in to see me. It is important to make all of your doctors aware of your migraine-related issues. I’ve been pleasantly surprised by their willingness to accommodate me during my visit.
Spreading awareness about our migraine triggers
There are some stores I choose not to go into if I’m having a bad day, but overall the sunglasses and hat work well enough get by. You may see a man in a hat wearing dark glasses one day. That man may be me living my life in the shadows thanks to migraine! I’m always looking for different ways to live a full, complete life with migraine. I encourage you to be open with friends, family, and most of all your doctors when it comes to migraine disease. There are so many great resources online for people with migraine like Migraine.com. I also make sure I’m available for the yearly Migraine Summit online. This year the summit is from March 20 - 28, 2019. It’s a great resource for migraine education and the lectures are short and full of great information.
We are pleased to share this second guest post with you from our community member, Tom Picerno. Tom is a 50-year-old migraine sufferer of 10 years. He currently resides in Florida and has worked as a retail manager for the last 35 years. He works to educate others about migraine and help remove stigmas associated with the disease.
How much has your migraine disease changed or evolved over time?