The title of this entry may be unfamiliar to you, but you can probably guess the definition of "photophobia." Basic vocabulary rules are forming in your head, and you've come up with a few options. Scared of...scared of...photographs? Photographers? Photons? Light?
YOU'RE SCARED OF LIGHT?
No. Not quite that. But I am abnormally sensitive to it, and this sensitivity has only worsened over the years. Since I was a wee little thing, my classrooms have been lit with overhead fluorescent lighting, which is proven to be bad lighting for anyone (in terms of energy level and productivity). For us photophobic Migraneurs, the indiscernible flickering of fluorescent lights can trigger an episode. Unfortunately, our eyes and brains do discern the rapidly vibrating blue light when the vast majority of people are fine with it. Thus far, there are no solutions for photophobia, as people think you should treat the cause (in this case, Migraine, which I'm doing my damnedest to treat) and avoid the triggers if possible. For me, this is not possible. It's come down to my having to ask professors if we can dim all the lights but one row. After I flick the light switches on and off and the beginning of each class session (to my unwittingly ignorant classmates), I sit in the darkest area of the room and don my hat and sunglasses.
Unfortunately, I have to look up from underneath the brim of my worn baseball cap in order to see others while they speak; I have to adjust my reddish-brown-hued (to counteract the blue of the lights) glasses in strange formations so that reflected light from our white working tables doesn't flash into my eyes. In looking up from under my hat bill, the ever-sore left side of my neck starts to get tired and sore. Soreness of the neck? Yep, another one of my major Migraine triggers. The entire time I'm trying to manipulate my eye shields, I feel like a total drama queen. Logically, I know that people don't mind my needing to mold the environment a bit in order to adopt to it as healthily as possible. At the same time, I feel as if they're all thinking, "Oh, god. Here she goes...the Migraine girl, being overdramatic as usual."
Regardless of my classmates' opinions, which I'm sure are less intense than I posit here, I am sick of having to adjust myself so that I can sit in class while worrying the whole time that the Migraine is going to rear its ugly head no matter what. Usually it does flare up. As I write, the laptop screen is leaned way back so that the whitish blue light doesn't glare into my worn out eyeballs. My neck and left shoulder are tight and sore, and once in awhile the throbbing, dull pain worms its way up from my shoulder to my temple and cheek, where I feel a strange fizziness in my jaw. Then it's back down again to the shoulder until I manage to forget it for a few minutes.
Because I have Chronic Daily Headache in conjunction with Migraine disease, I'm not supposed to take my Relpax until the headache has started progressing. So I'm left with a half-headache almost every day, one that has recently become full-fledged on weekend nights, presumably because my week's stress has been lifted. (Yes, stress can be a factor as well as the lifting of it.)
I've turned from storytelling to complaining, which might be another sign the pain is worsening and I need to get off the computer.
Penny for your thoughts, nonexistent readers!
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11 comments:
I read your description of photophobia and felt some relief at last: there is someone in the world who shares the same "strange" symptoms that nearly no one believes can trouble one's life.
I am doing almost the same kind of manoeuvres to avoid light. But I live in a country where the sunshine is so bright I have to stay in doors most of the day.
Photophobia is crippling my life. I wonder if there is a real cure for it.
Your article gives me the relief of feeling there are others who share the same pain.
Finally, someone like me. I read your post and realized that I am not the only one sitting in a classroom with a baseball cap and sunglasses.
Do you have special sunglasses?
I've just ordered MigraLens and hope that they will help more than regular sunglasses.
Also, my university is putting in full-spectrum bulbs into the flourescent light fixtures. I'm hoping this will help. Have you ever tried this? In my classrooms it's all lights on or off, so I can't find a dark spot in the room. The Disabilities Dept. at my school has been very helpful.
Being photophobic is so strange. Even going to Rite Aid or Best Buy is a chore because it can throw me into an episode within 5 minutes.
Thanks for your post. I was feeling very alone with this and your post helped.
Finally, someone like me. I read your post and realized that I am not the only one sitting in a classroom with a baseball cap and sunglasses.
Do you have special sunglasses?
I've just ordered MigraLens and hope that they will help more than regular sunglasses.
Also, my university is putting in full-spectrum bulbs into the flourescent light fixtures. I'm hoping this will help. Have you ever tried this? In my classrooms it's all lights on or off so I can't find a dark spot in the room. The Disabilities Dept. at my school has been very helpful.
Being photophobic is so strange. Even going to Rite Aid or Best Buy is a chore because it can throw me into an episode within 5 minutes.
Thanks for your post. I was feeling very alone with this and your post helped.
Oh, and thanks for having a dark background with light text. It helps a lot.
I want to find Anonymous again and ask if MigraLens is working! Anonymous, I wish you'd signed in. Alas.
Migrane Girl;
I guess by now you know that you are not alone. I have suffered with migrane headaches off and on since I was 10. Four years ago I had a TIA and my migranes went from being off and on to constant daily extremely diabilitating pain. Also my photophobia increased and I could not longer go outside. These two increased so much that I could no longer work and went on disability. I went from a very successful consultant with a major computer company to a bedridden old lady. I was determined that this pain was not going to get the best of me. I saw doctor after doctor and began seeing neuroligists. I came accross this one that was know for her coctails of medications that helped with migranes. After going through all of her coctailes, botax treatments in my face and head and nerve blocks to my neck and head I was about to give in. Than she suggested a new treatment that I was a little skeptical to try (you have to excuse my grammer and spelling since my TIA both have gone astray). She suggested that I try an Occipital Nerve Stimulator. Since the nerve blocks seemed to give me some relief she thought that I would be a good cadidate. I went through a trial which involved one operation and when that seemed to help I decided to try the real thing. This involved a second operation. Now I have a nerve stimulator implanted at the base of my skull across the ocpital nerve. The wire is connected to a cable that goes down the my back to a battery pack in my butt. The battery pack has to be charges everyother week. I have had the implant for a little more than a year and my headaches have been reduced to a daily light throb. No more pain medication and no more staying in bed daily. I do have a bad headache about once every 2 weeks and sometimes the nerve stimulator becomes annoying and I have to turn it off. I don't know if you would want to check into this or not. You are so young to be burned with this device but than again you are two young to have headaches like you do. I still have photophobia and the sun and flourscent ligts bother me and they do still increase my headache pain. I too wear big hats and sunglasses all of the time. I tried to get Rx wrap sunglasses but my eyes would not adjust to the Rx in the wrap.
Good Luck and Take Care
Susan
sounds like ocular herpes infection to me (ie chicken pox). Try some UV filtering glasses. They make a big difference for me. Beware of LCD monitors and TVs. The are backlit with fluorescent light. Try L-Lysine. If it helps, then you have a viral infection (usually worse in one eye). Don't be surprised to get other symptoms if you are expesed to too much UV light (sinus infection, migraine associated vertigo, meniere's, bell's palsey, shingles). This can be cured by medication. Medicine has really dropped the ball on this.
hey girl im happy and sad to find out im not by myself in this situation. i am a 24 year old mother of a beautiful 5 year old daughter who i can not take to the park or participate in outdoor activities if the sun is shinny bright. due to the photophobia my nerves are damaged and i generated juvenile glaucoma. i dont know what to do i seen doctors all around pennslyvania and they said there is nothin they can do eventually i will go blind but i put my faith in god that one day i would find a doctor or a blessing whichever comes first, to help me watch my daughter grow up and i no longer hide in the darkness that im confined to.
Hello Migraine girl,
I have been living in the exact same way as you described since 10/24/08. Constant pain in eyes and head everyday without relief.I have been to every kind of doctor and had every test and meds tried without any results. Right now I am on Effexor which is doing absolutely nothing but giving me more side effects. I live in glasses and hats and trying to reach for items on store shelves is unbearable to my eyes. I also have been told I have chronic daily migraines but I feel all of these names are symtoms of something else and until they find the true cause I will not be cured. I would love to talk to you more via email. I am new to all of the blogging but you are the first person I have seen that has described my life. Migraine Girl 2 :(
Hello Migraine girl,
I have been living in the exact same way as you described since 10/24/08. Chronic pain in eyes and head everyday. I have been to every kind of doctor and had every test and meds tried without any results. Right now I am on Effexor which is doing absolutely nothing but giving me more side effects. i live in glasses and hats and trying to reach for items on store shelves is unbearable to my eyes. I also have been told I have chronic daily migraines but I feel all of these names are symtoms of something else and until they find the true cause I will not be cured. I would love to talk to you more via email. Let me know how we can set that up without putting our private email for public view. Migraine Girl 2 :(
Paradise (or any other reader), please feel free to email me any time. I will get back to you as soon as I'm able. My email address is themigrainegirl[at]gmail[dot]com. Thanks for reaching out and sharing your story. I'm so sorry to hear you're not feeling well.
hello to all, i have had photophobia and migraines for the past six years. the ride has been bumpy , and at times you wonder why things happen.
i'm happy to have found a place to hopefully meet some freinds, have a chance to talk to a stranger to share some experiences about what we are all dealing with .
i'm like everybody i have made modifications to my house to deal with this , the dimmers, lots of curtains, i have tint all over my car i wear the dark shades, i also have a low light projector hooked up to my computer using as my screen as tv's hurt. i'm looking into get the m 41 rose tint so if anybody has tryed that please let me know. to people whom are wondering what it is there are some awesome doctors in utah whom have come up with a tint that is suppose to block some of the light spectrum that hurts our eyes, if i remember right its a lot of the blueish spectrum but can't remember for sure.
i want to thank you in advance migraine girl for this place , i have additional material on some of the stuff that they have found out on photophobia if anybody would be interested.
this is my addy
oooharao@yahoo.com
if there is anything i can do to help anybody , i understand what you are going through , people just don't understand what we are goign through,
take care
mike
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