Friday, April 25, 2008

photophobia and fluorescent lighting: a quest

Like many other migraineurs, I suffer from photophobia, a sensitivity to light. My photophobia is constant, and gets worse as my pain gets worse, but since I've been living with this particular migraine since November, the photophobia has been particularly stubborn as well.

Also like many other migraineurs, I cannot tolerate fluorescent lighting. Part of the issue is the color of the light itself: the fluorescents at my office are tinted a warmer yellow, which I can live with, as opposed to the horrendous (and cheaper) blue-white found in many stores. These fluorescents not only immediately worsen my migraine pain, dizziness and nausea, but also have an unpleasant tendency of sending me running to the nearest bathroom with soupey poopies within 15 minutes. If my office had this blue-white lighting, I would have had to leave my job already.

Unfortunately, the tint is not the entire story. The imperceptible flicker of fluorescents is enough to drive the sensitive migraine brain wacko. This makes it a particularly difficult problem to deal with. Many of us cope by wearing sunglasses, or tinted glasses, but this is not always a viable option for me since I work in a field where I regularly meet with clients and consultants, so wearing sunglasses to these meetings would not be appropriate. It also doesn't do anything for the flicker, really, just gives our eyes a break from the brightness of the lighting.

What is a migraineur to do?

Fortunately, the woman in charge of office services at my office is also a migraineur, so she was able to help me get the fixtures over my cube turned off. This makes it possible for me to get through a workday without being miserable. It does nothing, however, for the fluorescents in our conference rooms or in the rest of our office.

Some months ago, I came across mention of the use of Nike Maxsight tinted contact lenses as a way to ease light sensitivity in Dr Alexander Mauskop's Headache NewsBlog. This reference simmered in the back of my head for a while, and I have since come across other mentions of the use of contacts to address light sensitivity. The Migraine Girl asked in an entry about MigraLens and Irlen contacts specifically for combating fluorescent lighting sensitivity.

After much Googling, I finally scheduled an appointment with my ophthalmologist when I discovered that his office carries the Nike lenses. I'll also note here that Nike discontinued these lenses a few months ago, but I figured I could at least schedule the appointment and talk with the eye doc and see if he had any suggestions. Who knows, the Nike lenses could be my saviors, and I would just order them in bulk from an internet supplier.

I went in for my appointment two and a half weeks ago with my eye doc, and explained my problem. He thought for a few minutes, then came out with a surprising statement - he had a few ideas, and he wasn't sure what would work but he was willing to work with me until we found a reasonable solution. He specializes in contact lenses, so I felt somewhat confident in his statement. He had some trial Nike lenses at his other office that he would look through to see if he could find any for me, and he would also dig up some other trial tinted lenses - just regular cosmetic FreshLook lenses with a slight tint - for me to try.

By the end of that week, he had the Nike lenses ready for me. He scheduled a two-week follow-up appointment with me, to give me time to try out the lenses.

First reaction: they make me look like some sort of demonic beastie (migraine beastie, maybe?). The ones I tried are the grey-green tint, which actually wash my eyes out to black. A very strange effect, but one I would put up with if they solved the fluorescent lighting problem. I would even put up with the startled coworkers.

Unfortunately, I only made it a few days with the lenses. I discovered my brain started to freak out after wearing them for about six hours. The tinting in them was too strange a color for all-day wear. (Imagine the color of bug lights - that's what color these lenses made everything.) This tint was especially pronounced on cloudy days, and we have a lot of those here in the Pacific Northwest. I also had a run of several severe migraine days, which may or may not be related to the lenses. They did help out a lot with sunlight though, when worn under my regular sunglasses, so it wasn't a total loss.

I had my follow-up appointment with my eye doc today. He offered me another, much more expensive option, which is prosthetic lenses. With these custom lenses, he can control exactly how much light is allowed into my eye, and I will not see any sort of a tint. He took some measurements of my eyes for these lenses and told me my pupils seem to dilate more than they should (not surprising - they also dilate unevenly depending on the severity of my migraine).

I feel these are a better option for me than the Nike lenses, but custom = expensive. He's taking a look into pricing for me and his office will call before they order them. The price tag should come in somewhere under $1000 - I may be able to get some medical insurance coverage for this, but it's not likely. (My vision insurance is basically only enough to cover my annual exam.)

I will be seeing my new headache specialist in just under a month, and I plan to pick his brain about this, at least because I want to see if he'll write a letter of medical necessity. He may have some other ideas too, who knows. The nice thing about these lenses is that they will reduce the amount of light entering my eyes in the periphery, which I think may help quite a bit with the fluorescent lighting issue. It won't solve it - really, nothing short of avoidance or removal will - but it's something.

Before I make this much of an investment, I will be doing some thinking about this. A part of me had hoped that my migraines would resolve somewhat quickly so I wouldn't have to deal with the photophobia/fluorescent lighting issue. But that is not likely to happen, and I need to find some ways to make my life more livable in the meantime.

Crazy idea? Maybe. As a side note, more blog space will be devoted to the fluorescent lighting issue in the future, on the advocacy side of things. Stay tuned for updates.

19 comments:

Craig said...

We are living the same life!!

I work as a school teacher in eastern Canada. For three years to the day, I have been living with extreme sensitivity to fluorescent lighting with no cure or help. I have been diagnosed with having a migrane brain. My workplace is filled with fluorescent light. I OWN 6 pairs of demonic Nike contacts and will not wear them because of the freak out factor. PLEASE keep in touch with any possible cures/treatments/helpers for this condition that is destroying my life! Is there a name for it? My email is craigseward@eastlink.ca. So glad I found this blog.

Anonymous said...

After a brain injury I, too, am extremely sensitive to lighting. Fluorescent, halogen, LED, CFLs you name it: they all have slightly differing effects (varying from immediate pain, to fatigue, the feeling of a low voltage electrical current buzz), but they all result in the same, incapacitating, migraines. Exposure puts me out for a day or two, sometime 5 days, sometimes memory loss.. it's rough.

I have tried some lenses, orange with green mirrors, which, during the one instance, put an end to the fluorescent buzz. I am still attempting to track down that line of lenses, and it will take an appointment with a new doctor, time and money to complete my personal research.

In the mean time, I have ordered a pair of FL41 tints with blue mirrors to see if they have any effect. The combination felt good for a few minutes, but, as you probably know, a few minutes doesn't really give you the whole picture. I used a pair of glasses I had on hand and I figure that $105 for the tint and mirrors is a reasonable cost to give it a try. Perhaps you can ask your optometrist about that tint. Here's the webpage for this special tint. http://www.callbpi.com/htm_cat/fl41info.htm

Best of luck to all.

ilcraque said...

hey Anonymous above; plz email me at ilcraque@gmail.com; i have very similar problem and i'm trying to find some useful solutions...

peace

Anonymous said...

Have you any of your been tested for Irlen Syndrome? Apparently sunglasses wont work. Since fluorescent lights have a very skewed light spectrum (tricks the brain into thinking it should sleep), you need lenses that filter out certain wavelengths, not just sunglasses that tint but dont filter. I am going to try and will let you all know.

Frederick B. Gerwig said...

I am a school teacher in the US and have developed a non-stop 24 hour a day right side headache that has lasted for over three months. I have had scans and have no tumors or bleeds. I cannot stand to be under florescent lighting and my school is full of it. I am being treated for Hemicrania Continua or literally a headache on 1/2 my cranium that is continuous. The lighting is a HUGE trigger. This article about these contacts gave me some hope, but it seems I am a few years too late. All contacts of this type seem to be discontinued. I wonder why this is so?

Kimberly said...

Hi Frederick, I just received a pair of tinted lenses TODAY. You are NOT too late. The brand is Chromagen. They are actually made for children with learning disabilities and color blindness. Out of frustration for my condition, I asked Chromagen if they thought it would help me. I got the darkest tint of blue they carry. I am trying them out. If you are interested, I can keep you posted. ~Kimberly

Anonymous said...

I've been suffering from this since middle school. I've noticed that it gets worse when I'm near fluorescent lighting, when it's cloudy, and when it's raining. Recently, a few weeks ago, it was really hot, so people started using their A/C and my lightbulb became dimmer. My photophobia got better. Maybe it's because the lightbulb's too bright. In addition, my photophobia gets worse after I consume a lot of sugar, such as when I drink my cup of coffee in the morning.

Jan UK said...

I have this problem too, and have just purchased some Cocoon wraparound sunglasses, with orange lenses. They claim to block out 100% of blue light, which is what I think the problem is. They cost $29.95 (plus shipping), so it's worth a try? Amazon also sell some (much less attractive)glasses with green lenses which block both red and blue light. I'm hoping the cocoons work though!

MigrainePosterChild said...

I found this post really interesting. Thanks for sharing your experiences. I am a hemiplegic migrainer who has been experiencing what seems like prolonged visual aura for several months. I have always been sensitive to light, but since moving from CA to OR over the summer, I have felt that everything has been too bright and visually off. I went recently to the Optometrist about the issues and she is updating my glasses with tints and prism in the lenses, which she feels should help. I would love to get an email from anyone in Oregon who can recommend a good migraine specialist. Migraineposterchild@gmail.com

Anonymous said...

I also thank everyone for their posts.
FYI I ended up going to an Irlen person. I got some contacts.. spent quite a bit of monies.
I also work under very bright fluorescent lights. Insanely bright.
I had to go with the darkest blackgreyish colour.
They have minimized my symptoms a lot.
But there is only one flaw, the contacts are not fully comfortable. They're not like regular contacts. They're very thin.
Overall, they have minimized my symptoms but very difficult to keep them on for more than 4 hours at a time.

Irene said...

Hello,

I am experiencing this same thing--migraines from being in flourescent-lighted spaces--and the optometrist doesn't seem to think that there is anything I can do except wear a hat.

I just started graduate school and my entire building has lighting that gives me headaches. Usually after commuting home I am immobilized by the migraine.

Do I need a contact lens prescription in order to try some lenses like this? I am hesitant at the money involved but I want to solve this, as it is limiting my ability to participate in my graduate program.

Any updated information on anyone who posted on here would be helpful. You can also email me at ammar.irene@gmail.com.

Thank you!
Irene

MJ said...

Hi Irene,

The Nike contacts were discontinued several years ago (2007 or 2008). I ended up not pursuing the prosthetic lenses as they seemed to be too expensive for any benefit they might provide.

Since I wrote this post, a fellow migraineur developed specialized glasses to combat light sensitivity, particularly fluorescent lighting. I haven't yet purchased the glasses to try them, but a number of migraineurs I know have used them with great success. I suggest you look into them to see if they might help you. She offers a full refund if they end up not helping you. I'm also in graduate school, so I certainly understand your difficulty with lighting and school.

Here is the link to her website, where you can order the glasses: http://www.theraspecs.com/

Also, if you haven't already, I would suggest looking into disability accommodations for your migraines. I was able to get some approved by the disability office at my school, which has made it possible to succeed in grad school where I might not have otherwise.

Best of luck to you.

Ryan U said...

Just wanted to leave my info on a trial with Theraspecs. They use Fl-41 tinting, so they are the same as any other company that uses this tint on their glasses (i've tried three). I have extreme light sensitivity and glare issues. If you have VERY minor migraines, this may assist you. I ordered the outdoor and indoor glasses, and I found neither to be of any help. The outdoor ones would work a little bit indoors, but the tint they put in these glasses is almost non existent. If I had to guess, I'd say the tint is in the 2-4% range as they are completely transparent. I can't understand that for outdoor glasses as the other companies put much more tint into them.

Theraspecs itself is a wonderful company with great customer service. If you order a pair of their glasses without prescription, you can return them for a full refund within 45 days. They respond quickly to all inquiries and even emailed me when they received them back to update me on my refund (which was promptly processed). It will just tie up about $130 bucks during your "experiment". If anyone has any questions feel free to email me at chiefs3182@gmail.com. I have been dealing with this for about three years and have been to 13 different opthalmologists as well as every specialty doctor that exists. I have no received a diagnosis yet or any help, but I Have tried just about every option on the planet so I can at least provide my experience and guidance in the issues.

Anonymous said...

I'm in the same boat as the rest of you and also got suckered into the BPI FL-41 lens tint by an optometrist. They can make them very dark and created mine with about 12% VLT. I tried them at work and they were absolutely awful on the computer. The company I work for has red and white as our logo and almost all the web applications we use are red or white background. The FL-41 tint being red completely made me color blind for everything I was doing on the computer. The tint provided no relief from migraines or my light sensitivity. The color of the tint was so horrible that I could not keep them on for longer than a couple minutes at a time. I'm sorry to say it for people seeking relief but the FL-41 tint is horrible and will not help at all. I'm still seeking a solution but hopefully can keep a person or two from wasting $100+ to get custom lenses made with this tint. Gunnar glasses sometimes help me but usually not, I will put them on whenever glare is a problem on the computer and much cheaper than the FL-41 if you order online.

MJ said...

Thanks, everyone, for commenting with your experiences. I wanted to jump in here and point out that some people have success with FL-41 tinted glasses and some do not. Just like any other treatment, how it works for any individual person will vary. Anonymous, I published your comment because I believe others may find value in reading about your experience, but it's also important to remember that some people may indeed have great success with the FL-41 tint (I know a number of migraineurs who swear by their glasses).

Thanks, all, and best wishes.

-MJ

Anonymous said...

Sorry this is late commenting, but thought I'd share my experience as well. I received my first set of tinted contacts back in September this year and haven't looked back! I have a heavily brown tinted contact sense for an un-diagnosed problem with my left eye since Nov 2012. Since then I have been left with severe photophobia and constant use of sunglasses became not only a daily nuisance and a problem in the workplace too, got told (due to working on customer services/tills) that I was not allowed to wear my sunglasses due to the appearance it gave the customers of the store. After many months of doctors appointments, one after the other I decided to go to my local opticians (vision express) to see if they could help, they were very friendly and told me that a company can make personal tinted lenses in any colour that eases the pain, for me it was brown, (the colours came in red, blue, grey and black? If I remember correctly) it cost £130 for a 12 month/annual lens and took around 10 working days to be delivered to store. It's costly, but if you break it down into what you'd pay each month for it, it works out at a reasonable price.

If anyone is thinking of ditching the sunglasses for a little more comfort, I would seriously consider this as an option, it's helped build up my confidence, feel much happier and in much less pain, which I've been longing for nearly 2 years.

Anonymous said...

I have the same problem! I've had chronic migraines for the past 6 years, but only in the last year or two have they gotten to the point where I absolutely cannot handle fluorescent lights. I was actually accepted to grad school, but ended up not going because of the fluorescent lighting. Now I have gotten into massage therapy-a beautifully incandescent field. But church and shopping are seriously rough.

Here's what I've tried and my experience with them:
Darkening contact lenses: I got these from an ophthalmologist fairly early on-back in the days when I still felt self-conscious about wearing sunglasses in public. Haha. They were blue and black. They had the unfortunate combination of not blocking nearly enough light to make a difference and making my vision annoyingly blurry.
Irlen glasses: Mine ended up yellowish-brown tinted. They seemed good when I tested them for a few minutes, but when I tried to actually use them the tint just made my head hurt more. Generally a waste of money.
Theraspecs: At first these were a godsend. The indoor ones did nothing, but the outdoor ones made it much easier to function under fluorescent lights. It has been a year now since I got them, and I have noticed a marked increase in my photophobia. Whether this is because of my over-dependence on the glasses (they do warn against wearing them indoors) or if it would have happened anyway, I don't know. But be warned! Avoiding light can actually make photophobia worse in a horrible and vicious cycle. I now wear them with a hat and can handle maybe an hour under fluorescent lights, on a good day, and get only a mild-moderate migraine.
Vision therapy: I've just started this. With colored lenses and eye exercise, the ophthalmologist is confident he can help my amblyopia and tentatively hopeful about the photophobia. I can keep you posted if you like. Also, to those of you who can't work at all under fluorescent lights, what jobs have you found? Massage therapy is nice, but I'd like to know of some other options.

If anyone find something that truly and properly works, PLEASE let me know. My email address is: julieslinsenmeyer@gmail.com

Jonathan said...

So interesting to hear everyone experiences trying migraine glasses, and isn't it just strange how all of these natural migraine remedies work for some and not for others. I think there's a lot to still uncover in the science world to explain migraines. I just wanted to share my recent experience with the fl-41 tinted glasses. I am a total techy and research hound so after a friend recommended I try computer glasses or migraine glasses because I work at a computer all day, I went into OCD research mode to make sure I found the best option. Long story short, I use two now, while I'm working on the computer, I use Gunnar glasses because they have the lease altering effect on the actual screen so I can work longer without the eye strain. When I'm not on the computer I have a pair of Axon Optics migraine glasses that work very well for me whenever I feel a little light sensitive and the start of a migraine coming on. I know other companies market well and have great customer service (not that Axon didn't!) but when you look into the science and research behind the product, the founders of Axon are all doctors and were the ones who discovered the fl-41 tint that worked to reduce migraines. So for me it was a question of, do I want to buy the product made by the originators, or by someone just copying it?
Like everyone on here has said, these glasses don't work for all, but I thought for anyone who's had limited benefits from a version of migraine glasses, might want to try the real deal to try and find relief.

Virginia of Axon Optics said...

I'm late to the party! I'd love to help with any questions you have about this type of specialty lens. We have links to the scientific publications on our website. Basically, if you have light sensitivity, there is a 90% chance the lenses will help to some degree. We offer several versions, including contact lenses. I've been personally wearing them for three years and don't want to spend a day without them! You can email me at support@axonoptics.com, or visit our website and speak with me on our livechat function. I hope everyone reading this can a Pain-Free Day!