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person hiding inside of their house from the bright light of day

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • AZReynolds
    7 months ago

    I have a bag full of the wraparound glasses from the eye doctor. I too double up on sunglasses and always wear a baseball cap. In the summer time while working in my garden, I wear a very wide brim straw hat. Neighbors joke about it, nut it’s the only way to keep the pain at bay! All my neighbors know if my curtains are pulled shut, migraine day! So they check up to see if I need the dog walked. I’m blessed!

  • glassmind
    7 months ago

    That’s so wonderful to have such supportive neighbors!

  • Tom Picerno moderator
    7 months ago

    AZReynolds thanks for sharing! I’ve been out in New Mexico and I know how unrelenting the sun can be. It is so nice to hear that your neighbors have your back. It truly is a blessing to have that kind of support

  • glassmind
    7 months ago

    In addition to the strong photophobia during a migraine, I am always sensitive to lighting.

    Led lighting, flourecent lighting, flasing, blinking, buzzing lights.

    Before I had my first migraine these always caused mood problems for me.

    Twilight is an issue also. That odd half-light makes me aggitated and aggressive. I actually have to increase lighting to feel better!

    My family and friends all tolerate my lighting quirks, but it is difficult for others to accept. I had to get doctors’ letters to have adaptive shades where I live (Hoa rules prohibited what I needed) and to wear tinted glasses when in high school.

    Being retired, I generally have the option to stay home where I can control lighting, but when I have to be in a business or other indoor setting with my sunglasses on, I always fret that people will think I am hungover. I am so quick to tell people I have a migraine! And I also ask them to speak slow and quiet. I do ask to turn down the lights when possible. Many people are happy to do so. They often say things like “Yes, it was too bright in here.” Or “The natural light is better”. I see a shift in thier body language and demeanor as they relax a bit, too! (:

    Increased awareness is so helpful.

    Thank you again for sharing. It’s nice to have community here. Speaking up makes the world better!

  • Tom Picerno moderator
    7 months ago

    Glassmind it sounds like over the course of your life you’ve developed some great adaptations to protect yourself from harsh light situations. I totally get the twilight making you edgy. I also tend to get that as well as when I’m in a store that has bright or unfiltered lights. I try to keep my trips out very quick and focused to avoid the agitated feelings. I also don’t want to bring on any additional migraine pain.

  • glassmind
    7 months ago

    Light sensitivity is a challenge! Thank you for sharing.

  • Colleen Meegan
    7 months ago

    As a redhead, I am plagued by photophobia 24/7. The searing pain of light during an attack is 10 X worse. I’ve adjusted all my light sources to have indirect light. Rarely open the blinds. When at work, I never ever turn on the overhead lights & put a cute little lamp in my office.

  • Tom Picerno moderator
    7 months ago

    Colleen thanks for your comment. I have terrible photophobia as well. Does re hair mean you are from Irish decent?

  • Danyelle
    7 months ago

    Hello fellow vampires! I am plauged with photophobia every day with my chronic migraine and IIH. I have found that tinted glasses on the brown spectrum are really helpful for making being in the light more bearable. I also have a “roof” over my cubicle and have been able to have the lightbulbs removed from the light right over me. So if you wear glasses consider tinted lenses they are a lifesaver and don’t have polarization like sunglasses so reading screens is easier (you can get prescription tinted glasses for as cheap as $50). Also if you work in an office setting see what you can do to your workspace. My roof is made from 9 Dollar Store foam core boards and some binder clips and it’s inconspicuous and you don’t realize it’s there until you come to my cubicle so it’s not distracting to others.

  • Tom Picerno moderator
    7 months ago

    Danyelle thanks so much for your comment! You called out some really innovative strategies to get you through the work day. It’s great that your workplace has allowed you to make modifications to your work space. I am using brown tinted sunglasses myself and find that they do help more than my gray tinted glasses.

  • poppymom
    7 months ago

    Nadolol has really helped my light sensitivity. Occasionally, I get a “light shadow” that sticks around awhile. They don’t go away as fast as they used to. Don’t know what they are called.

  • Tom Picerno moderator
    7 months ago

    Thanks for your comment poppymom! I’m not familiar with that drug being used for light sensitivity, but beta blockers are used for off label symptoms. I’m currently on metoprolol.There are lots of drugs that have multiple uses out there!

  • Sher77
    7 months ago

    I wear glasses and am wondering where I could find strong enough clip on sunglasses to block sunlight if I need to go outside during a migraine. I don’t have the specialized lenses for my glasses and I should as I am a chronic migrainuer with migraines almost every day.

  • Tom Picerno moderator
    7 months ago

    Sher77 you can check at an optician’s office as most of them have a selection to choose from. I use a magnetic clip on that is made for my frame style and they work well. The cost was 50.00 and they are holding up pretty well so far.

  • Danyelle
    7 months ago

    What is your glasses prescription like? If they are single vision and you don’t mind plastic you can get tinted lenses for cheap at Walmart. For shades darker brown ones seem to help block and diffuse light better than black. I hope you find something that works for you!

  • musicmacd
    7 months ago

    I fully understand

  • deedueck
    7 months ago

    I used to love a nice sunny day!! Being outside with the kids or the dog. Sunglasses and hats have become essential and my favorite days are the dark and gloomy ones, the ones where I don’t have to wear my sunglasses inside.

  • Sophie Tramel
    7 months ago

    I am the same way. I work Night Shift to avoid the sun, and my favorite days are the rainy ones. I feel like a vampire.

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