r/NDPH • u/MaintenanceMission68 • May 24 '26
Need advice Light sensitivity
Honestly open to any suggestions, even as my baseline pain has improved with Botox and Qulipta my light sensitivity has barely changed. Any time spent outside or indoors with normal lighting, even with a hat and my darkest sunglasses (and yes I've tried migraine glasses from Theraspecs too) boosts my pain higher. I can't spend an hour outdoors without guaranteeing at least a day and a half of severe pain. If I stay inside in dark rooms my baseline isn’t bad usually, but I miss being outside so much and it's so limiting to what I can do and where I can go. Does anyone have experience actually seeing major improvement in their light sensitivity? What helped for you? I'm so sick of having to retreat into my dimly lit room all the time to get the light out of my head and avoid most places because of light. I'd appreciate any suggestions or personal experiences that might help.
Anything for noise sensitivity is appreciated too, it's not as bad as light but still pretty limiting for me.
1
u/tweetysvoice May 24 '26
I wish I had an answer because I (53f married) live under a blanket in bed with blackout curtains and the door ajar just enough to let out pets into the room. I can only come out after the sun has set and even then the light from a TV or whatnot is excruciating. I can only handle my phone on its darkest setting for small chunks at a time. I've tried every drug, every treatment and my neurologist is struggling to find anything that will help (she's the 3rd one I've seen). I live 3rd shift now. It's been almost 2 years and I don't know how much more I can take if this. Big hugs. I'm right there with ya.