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Daylight a huge problem


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I mentioned in an earlier post that my daughter was finding herself to be highly sensitive to natural light.  She has found that if she stays away from sunlight (a miserable enough way to live, on top of having cluster attacks) she is practically painfree (we recently thought her cycle was nearly over), but if she sleeps in her bedroom where some natural light comes in she gets hit not long after waking up, and if she goes outside in daylight she gets bad attacks within an hour or two. Multiple attacks.  We have checked carefully for other possible triggers and just don't see any. She has a couple of good days, goes outside in the afternoon to walk her dog, and wham gets hits that are sometimes resistant to O2 and energy shots, which usually work for her.
 
Have others experienced this?  Any suggested explanations?
 
I realize it might be time to see a neurologist, but aside from the very long wait to get to see one, not being able to go outside in daylight severely limits her options.

 

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CHF,

Sorry about what she is going through, your right might be time for neurologist.

Only thing I can throw out there is she taking melatonin? I ask because even though it is a fairly safe treatment that has helped many, I took it out of my treatment last cycle. I felt I could not find a dose that worked for me. I believe I could not match what my body needed. I don't have any direct experience against the sunlight but I felt definitely worse during daylight hours when I was on the melatonin. I also work swing shifts so my body clock is usually a little off and everyone is different.

I hope you can find a trigger for this.

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I've heard of sunlight being a (on the rare side) trigger for CH. Personally my eyes have grown sensitive to sunlight during hits and from spending 99% of my life indoors due to CH. Triggers I come across outside is cigarette smoke and certain heavy perfumes. Walking my dog is a game of eagle eye smoker spotting and holding my breath when such people pass me by. If sunlight is truly the trigger itself, how about some really big and dark sunglasses? A good uv filter on the glasses might ease her troubles a bit?

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Keep a clean registry of all attacks, medicine use, and other things you do to get less attack or feel better. Use the app I made for us if you want to. It will give a nice timeline showing all individual registrations nicely in graphic.

 

This way you will have better view on what is going on I think.

 

It is free to download, just look for: Register your journey in Google play or Itunes.

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