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Light Sensitivity

  • By maxgeo

    Greetings! I suffer from multiple types of migraines, multiple triggers, and multiple symptoms, and I mostly never know what I’m going to get or when. Although I do try to avoid the triggers that I know of, things like weather and seasonal changes never help and can bring on an attack at any time.

    The one symptom that has always puzzled me though was how severe my light sensitivity can get. I’m not just talking about your run of the mill “The ambient light coming through the black-out curtains makes it look like all the lights are turned on.” I can become so sensitive to light, that it actually seems like I can feel the slightest bit of it’s energy bouncing off my skin. It is generally with my worst migraines that I get this way; especially the ones where I can feel it coming on but nothing is stopping the migraine or the pain.

    When I get like this, no mater the temperature, I basically have to get a thick comforter and go into as dark of a room that I can find, then curl up beneath the comforter from head to toe. And even then I may still find that my skin is crawling from what little light may be getting through an opening in the comforter.

    I come from a long line of migraine suffers, but I have never met or really heard of anyone else with this sever of a light sensitivity symptom. Does anyone else present with this type of symptom? Has there ever been any research done?

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  • By GardensatNight

    Greetings, fellow severe LS buddy! Alas, the club no one wants to join. Mine is so bad we haven’t turned on any lights in my house in years. Even a one-second flash of man-man light triggers an attack for me (chronically–not just during migraines.) Before this, I was completely “normal.” I now use a special computer screen that doesn’t flicker or emit light. In addition to strong family history like you have, I’m also a CSF leaker, which is known to cause severe LS. My freaky LS stumped all the doctors for three years and several accused me of making it up because they’d never seen anything so severe. Then the CSF leak showed up on the CT and they were like oh, that’s why. Grrr… doctors who don’t believe patients…

    I’ve done quite a bit of reading on the subject, and been to four neuro-opthamologists, two of which are headache specialists with an interest in light sensitivity. Treating my leaking is important to (maybe) helping me get better, although the fact that it took so long to catch it is according to this doctor, potentially not the best thing in recovery prognosis. The other three had lots of suggestions that didn’t work. Well, nothing has worked yet, but at least now I have a correct diagnosis. Still hoping!

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    • By maxgeo

      Thank you for sharing, it really is nice to know that I’m not crazy. Though what you have said about yourself gives me something more to consider and discuss with my own doctors. Wishing you the best.

      reply
    • By Nancy Harris Bonk Moderator

      I didn’t know you were a “leaker” GardensatNight! Do they know where the leak is?

      Curious minds….
      Nancy

      reply
  • By Nancy Harris Bonk Moderator

    Hi maxgeo,

    Thank you for sharing that with us. There seem to be quite a few people with migraine disease who are ultra light sensitive. At one point I had dark blankets covering my bedroom windows to help with that, but now have dark shades that are helpful. There are room darkening curtains that can make a big difference as well. Here is an article that may be helpful; https://migraine.com/living-migraine/photophobia-dealing-painful-light-sensitivity/.

    There are glasses made specifically for people with light sensitivity. I have an outdoor pair from TheraSpecs I love.You can find more information on theme here; https://bit.ly/2wVWBsJ.

    Let me know what you think,
    Nancy

    reply
  • By Nancy Harris Bonk Moderator

    Hi maxgeo,

    Thank you for sharing that with us. There seem to be quite a few people with migraine disease who are ultra light sensitive. At one point I had dark blankets covering my bedroom windows to help with that, but now have dark shades that are helpful. There are room darkening curtains that can make a big difference as well. Here is an article that may be helpful; https://migraine.com/living-migraine/photophobia-dealing-painful-light-sensitivity/.

    There are glasses made specifically for people with light sensitivity. I have an outdoor pair from TheraSpecs I love.You can find more information on theme here; https://bit.ly/2wVWBsJ.

    Let me know what you think,
    Nancy

    reply
    • By loweduane

      I work in a military hospital pain clinic. We read research recently that green light was less painful to most migraineurs, and decreased pain in about 20%, plus it also didn’t elicit negative emotions lIke other color (red being the worst).

      We thought we would try green glasses for our patients with migraine, but found it hard to find any, and the ones we found were expensive. But then we found certain glasses used for some types of welding use green lenses to block infrared. We also found a source that was very affordable. So we ordered a bunch. They come in a couple shades, darker and lighter (5.0 shade and 3.0). We give the patients 2 pair and have them use the dark outside and the light ones inside.

      We have been very happy with the results. While a couple have not found them beneficial, most have become reliant on them. Results differ. Some get decreased pain and shorter headaches. A couple note that if they wear them as soon as they know a migraine is going to start, they can prevent the headache. Even some of our patients with non migraine headaches have benefitted.

      The glassess we ordered were Pyramex Emerge. But for those with extreme light sensitivity, I would recommend Crews Reaper ir 5.0 and 3.0. Because they have a removable gasket that blocks all surrounding light. Both of these can be found online for very cheap. It is just a bonus that they are stylish, polycarbonate, and block UV light as well.

      FYI, in Rats, proloneed green light exposure decreases pain perception in the whole body, so it may help with more than migraines if worn a few hours per day, though the research on humans has not been done…yet. But what are the side effects of trying?

      Just some info. I work for the government so I have no financial interest in any of these items.

      If anyone tries these glasses, please let me know your experience.

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  • By loweduane

    Oh. When searching for these safety glasses, you want the IR 5.0 or 3.0 shades, those are the green lenses.

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  • By Nancy Harris Bonk Moderator

    Hi loweduane,

    Thank you for sharing that information with us. There are glasses that are specifically make for people with photosensitivity. Two companies that make them are TheraSpecs and Axon Optics. Let me share that information with you here;

    https://www.theraspecs.com/

    https://www.axonoptics.com/.

    Thanks again!
    Nancy

    reply
  • By glassmind

    Photosensitivity of the skin is real. I read about a woman once who esentially is trapped in her house as even streetlamps can cause her skin to burn.

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