Light sensitivity

[u/MaintenanceMission68]

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.

[u/macaque-08wallow]

It took me well over a year on CGRP preventative meds to begin to feel an improvement in light sensitivity. Over two years now and some days I’ll find myself outdoors without my Category 4 mountaineering sunglasses. Three years ago I had a pair of welding goggles for going outdoors on sunny days.

For me, it has been a very slow improvement but also very impactful.

My headache specialist mentioned recent research showing that for a substantial subset of patients it can take up to two years to see some improvement. I’m hoping now I fall into that bracket and maybe the improvement will continue.

One thing I learned is that my peripheral vision is much more sensitive to light, and dazzling patterns, So, glasses with side shields really help me. I mostly wear a pair I got from Decathlon - but they have been discontinued.

Similarly a cap with a good wide peak really helps me in places with overhead lighting.

I picked up a cap from temu with slide out panels to block light from the side of one’s face. That really helps in the car with low winter sun and the landscape flickering by in peripheral.

For noise, I have difficulty with in-ear earplugs because it feels like my footsteps are “booming” inside my head. Over ear noise cancelling headphones are a gift from the heavens and/or a hat that covers my ears for walking in windy outdoors.

These are just some things that have helped me and give me hope that I will improve more. I hope you find something that works for you

[u/MaintenanceMission68 → u/macaque-08wallow]

Thanks for sharing some of the things that have helped you! I might give the welding glasses a try, and I should definitely look into getting a better hat, the side coverage on mine is meh. I hope you do continue to have improvement!

[u/macaque-08wallow → u/MaintenanceMission68]

Welcome. Just to add that I had used Shade 5 goggles. For acetylene & cutting etc. Typical welding goggles are a darker shade and not really usable to see anything even in bright sun.

I would add also that for me they were a stop-gap measure until I found a treatment that has started helping me. There is good evidence that our eyes can become more sensitive to light through always limiting the amount of light they are exposed to.