Bad Light Sensitivity---Any Ideas On Making it Better?

Discussion in 'Fibromyalgia Main Forum' started by zenouchy, Jun 24, 2012.

  1. zenouchy

    zenouchy Member

    Hello All,

    Happy Sunday to everyone. I was wondering if anyone experiences light sensitivity and if so, have you been given any viable suggestions for improving it or ideally getting rid of it? Since being dxed with fibro 8 years ago, I've had light sensitivity (aka photophobia), and it's gradually gotten worse. It's to the point now that wearing sunglasses indoors doesn't always do the trick anymore.

    The worst offenders are those fluorescent lights, which seem to be in just about every store and doctor's office. My past few doctor's office visits were conducted in the dark! (I joked that I was really a vampire. ;)) I sometimes leave stores that have really bright flouresc. lights feeling nauseated now, and that hasn't happened in the past.

    Also, I now seem to get what has been called a "hybrid" migraine, but only twice a year. I also have some funky eye issues. I regularly see an opthamologist who monitors that, as well as a neurologist re: the migraine issue. They have made suggestions for the eye conditions and the migraines, but both do not have ideas for getting rid of the worsening photophobia or the root causes.

    If anyone has any suggestions on what helps you with photophobia or what might cause this to happen in the first place, I'd love to hear from you!

    Thanks all,

  2. mbofov

    mbofov Active Member

    Light sensitivity can be a symptom of a B2 (riboflavin) deficiency. B2 deficiency is also linked to migraines. If you google "B2 deficiency light sensitivity", you can find more info.

    Also, check your meds - some meds cause light sensitivity, and don't rely on your doctors to know this. You have to check the fine print in the handout that comes with medicines yourself to check for side effects. Also you can google the name(s) of meds together with the symptom you're checking on.

    Good luck!

  3. zenouchy

    zenouchy Member

    I will look into both of those supplements and see if they are ok to take with the other meds/supplements that I use. My neurologist that I saw last Thursday suggested trying B2 also. I will see about the GSE as well. The meds I use aren't known to cause photophobia, but I will double-check them.

    Thank you both so much for your helpful suggestions!


  4. spacee

    spacee Member

    The fluorescent lights are awful.

    My doc ordered Klonopin (actually clonazapam the generic) for me to have
    to place a small amount such as .25mg under my tongue to let it dissolve.
    It's Dr. Cheney idea.

    Recently at a wedding shower for my now dil, I got so ill that I had
    nausea & odd feelings in my brain for several days. Afterwards, reading
    Cheney, I found that it is not just light but sound and motion that can
    cause problems too. The light, sound, motion are amplified to us because
    of our brain being slightly toward 'seizure' state.

    I think the B-2 deficiency is an interesting thing to investigate too and the GSE.


  5. zenouchy

    zenouchy Member

    Thank you very much for responding. I'm so sorry you are getting the terrible sensitivity towards lights as well. Do you have more info about Dr. Cheney's protocol? A website or a book perhaps? A website would be easiest if that's available. I took Klonopin for anxiety several years ago and then stopped. (Long story.) I wonder if I could re-start it again.

    Does the Klonopin make you drowsy? Also, do you know if it interferes with deep sleep? There's many meds out there that seem to disrupt the deep sleep cycle, which has been a challenge for me.

    Thank you so much for the information. I am looking into the other supplements as well. I'm going to get blood-tested for B-2 deficiency and will investigate the GSE too. Thank you for your help, and I hope you feel better too!


  6. ryanlongboard

    ryanlongboard New Member

    I've had issues with migraines caused by light sensitivity for years. When it first happened, I was using prescription sunglasses to help block out the UV rays. But I didn't want to have to wear sunglasses in my home any more. I talked to my doctor who suggested installing solar shades in my house, as well as fluorescent light bulb jackets (as there are fluorescent lights in my basement). I got free samples from and ended up choosing black out shades for my bedroom, which blocks out all light in my room and gives me a personal oasis to escape my photophobia. I have a porch area in my house overlooking the backyard which receives a lot of sun light that I was never able to enjoy during the day. But North Solar Screen helped me pick a shade that would block the harmful UV rays which cause migraines but still let me enjoy the view. Even better, all the solar shades have saved me money on energy bills. Hopefully this can be of some help to you. Good luck!
  7. J3HS

    J3HS New Member

    You might look into eyeglasses tinted with something called FL-41. My wife's neurologist told us about the tint and it has been shown to help with photophobia, and especially with blocking the part of fluorescent lights that messes with the brain. (She has migraines but I know it's helped with other conditions too.) If you look for glasses with it, my suggestion is to look for ones that wrap around. The first ones we tried were normal glasses and they let in too much light from the top and sides to be helpful. In any case, I hope you find some relief!
  8. zenouchy

    zenouchy Member

    Thank you both for the great suggestions! Ryan, I live in TX, so the solar shades could be very helpful for both my eyes and on our pocketbooks. Awesome idea!

    J3HS, yes, I do wear wraparound sunglasses. That helps quite a bit! As for the The FL-41 tint, does that happen to be a peachy/orange color? An optometrist mentioned that this color somehow tricks the brain into being less light sensitive, and I may try it the next time I need new lenses. I'm just wondering if EVERYTHING will look kind of peachy when I look through my glasses. I don't know if this is what the FL-41 tint is. Thank you for the info, and I will check it out!


  9. Saoirse3

    Saoirse3 Member

    I was having a bad issue with snow blindness, because the sun shines "sideways" during our winters. I got the Transition lenses on my glasses, and I also wear clip on solar sunglasses over them. Wal-Mart always makes me feel nauseated. I don't know if it's the lighting, the smells, whatever, but even my DH can't stand it for long. The concrete floor doesn't help a lot either!

    B2 is supposed to help, as well as fish oil. I can vouch for the fish oil being really good for you. Bilberry is good too. My mother would claim carrots, but I think they just make a salad crunchier! LOL!

    Soft hugs,
  10. zenouchy

    zenouchy Member

    I LOVE fish oil! It helps with lots of things. So sorry about the bright lights bothering you too. Wal Mart is the worst. I get in and out of there as fast as I can, although that can be a challenge sometimes b/c the store is so ginormous.

    I'm going to try the B2 for sure, and a lot of people here are saying that Klonopin helps protect the brain from light sensitivity as well as help with sleep. I'll check out the bilberry---thanks! Yes, carrots are good for general eye health, but light sensitivity? No luck there for me either! LOL! ;)

    Soft hugs,

    [This Message was Edited on 06/26/2012]
  11. Sansofpa

    Sansofpa New Member

    I just started being sensitive to lights and brightness. It began
    in my bedroom when all the lights were off and my cell phone
    rang and lit up. It was a horrible feeling and was the beginning
    of my light sensitivity issues.

    Every light in my house that has a regular light bulb was changed
    to yellow bulbs . . the same ones you use in your porch lights to
    keep the bugs away. It helps tremendously.

    I use flipper sunglasses; I find them easier to use than having to
    take my regular glasses on and off all the time.

    Driving at night is brutal! Street lights and headlights literally cause
    pain . . the lights sort of spread sideways, too and I get nervous
    driving now in the dark. I cannot look at my dashboard light and
    have it on the dimmest setting.

    I suffer from Migraines since 1974, and most recently regular headaches,
    so I avoid bright lights totally, whenever possible.

    I never realized there might be something to help with this problem, so
    I thank you for your post and look forward to reading responses.

    Lights along with ANY noise really throws me in a tizzy. I haven't asked
    any of my doctors for a solution to it, but I will.

    I joke around and say I'm never washing the windows in my house
    because the cleaner they are, the more glaring the sunlight is . .
    BUT....a dirty window really, really helps. I have light-filtering shades,
    and sheers underneath my light-blocking drapes. I have 2 crank out
    windows on one of my bedroom walls - they are small and a regular
    shade is too big, so when the sun hits that side, a dark hunter green
    king sized pillow case drapped over my curtain works just fine.

    Being new to FMS, I didn't know there was a medical word for our
    light sensitivity. Is there one for "noise" . . I can't tolerate it, no
    matter what the volume is.

    Hoping you'll find some help and get out of the dark :)

  12. spacee

    spacee Member

    One day I could NOT take the light any longer. I still had a piece of board in
    one bedroom window (cut to size) from my Marshall Protocol days when
    they wanted you in the dark.

    But another window "only" had block out shades and blinds. I happened to
    have some black hand towels (who uses black hand towels?) that fit
    over this "eyebrow window..long and high but short). I took hammer
    and nails and nailed those black towels right over the window.

    Ahhh, dark!! We have the rattan light blocking shades on another bedroom
    so I am one day going to repaint the bedroom and put the rattan light
    blocking shades up.

    It's always something! :)

  13. sunflowergirl

    sunflowergirl Active Member

    What a difference it makes. Didn't even know how the drapes have changed from years ago. The morning sun came pouring into my bedroom at 5 a.m . and I was finding I had trouble sleeping, even with a towel over my head!
  14. Sansofpa

    Sansofpa New Member

    I discovered them when my oldest son got his first job after college
    on the midnight shift. He doesn't live near me and called because
    he just could not fall asleep during daylight hours. I ordered the light
    blocking drapes for him online and sent them to him. His bedroom
    during the day is pitch black now and that helped him tremendously.

    Seek and you shall find!

    I don't go to stores anymore, so like you, some things are out there
    that we don't know about . . that goodness for the Internet.

    The one pair of sunblocking drapes I purchased online had a thick
    rubber lining. I got onto an online chat with the customer service
    lady because I was worried about my heaters below my windows
    causing melting or fire to the rubber. She had a very easy solution;
    buy new rods that extend as far out from the wall as possible....
    That's what I did and I'm hoping they won't be a problem, come
    winter. Why are heaters put under windows, anyway?

    I have one of those bed tents for my grandson when he visits and
    because of the morning sun, I was actually going to put it over my
    bed . . LOL

    I did try an eye mask, but I just cannot stand anything touching
    my skin.

    When my sister took ill, her husband had quilted shades made for
    her bedroom and they served two purposes; saved on energy and
    kept her bedroom dark 24/7.

    Glad you found these sunblockers, too,