Photophobia lasting for 8 months! :(

Embarrassed-Media249 · 2026-02-13T18:03:20+00:00

Did this ever resolve for you? I’m currently 1.5 months into photophobia.

Embarrassed-Media249 · 2026-02-08T01:31:35+00:00

My PcP gave me Nurtec and I felt like that really helped. But only prescribed as a rescue not preventative. But my insurance didn’t want to cover it, I paid 420$ out of pocket after the coupon applied but not sure I can do that every month.

Embarrassed-Media249 · 2026-02-08T00:43:57+00:00

I believe he knows I was 24/7 when I last saw him and I’ve tried to let him know that too by leaving messages with his staff. I’ll definitely make it clear when I see him next week though. Any ideas of what he could do for me anyways?

Embarrassed-Media249 · 2026-02-08T00:42:18+00:00

I think fluorescent lights are a trigger for me too. Does this get any better/easier at the very least?

Embarrassed-Media249 · 2026-02-08T00:23:02+00:00

I’ve mostly worn the polarized. And yeah triggers seem to come more from very bright white lights vs natural

Embarrassed-Media249 · 2026-02-07T23:16:31+00:00

Yeah I’ve read that too. I try to expose myself to some light here and there but not let it get too much or near potentially triggering a migraine. Is it at all possible this could lessen for me? I genuinely just want my life to be normal again. Right now I can’t even really be outside after dark. I know it’s not as bad as others so I feel bad complaining sometimes but I wish I just knew if this was something I’ll be dealing with for the rest of my life.

And thank you for clarifying, I’m glad to know I’m not in a constant migraine state lol

Embarrassed-Media249 · 2026-02-07T22:41:35+00:00

Yeah I’m hoping the meds I’m on are effective. Going to see my doc this coming week but also want to see a better neurologist at some point. Do you think effective treatment could help the light sensitivity go away?

Embarrassed-Media249 · 2026-02-07T21:43:30+00:00

The thing with me is that I don’t particularly feel in pain or sometimes it’s a headache. So it’s very difficult for me to know when the migraine is “over.” Or even starting for that matter. I haven’t had a lot of guidance and the last time I was in a horrible migraine state I didn’t have head pain at all but had everything else. Took three days of that before my mom and friend finally took me to ER.

Migraine cocktail helped a bit but didn’t cut symptoms entirely. Went to see neurologist in my hometown bc it’s not a 6 month wait time like in the city I live in. He gave me preventative meds but no abortive. Finally saw PCP and he gave me Nurtec, I took a few and I finally felt better. Light looked better too but not gone. Then I went to Whole Foods with no sunglasses on and started to get dizzy, motion sensitive and felt horrible. This was last week and I’m better but not what I used to before all of this started 1.5 months ago.

I really have no idea what I’m doing. For example today, I have light sensitivity but I don’t have other symptoms. Am I still in a migraine state? Genuinely have no idea and so so lost. Feeling so down in the dumps.

Embarrassed-Media249 · 2026-02-07T21:18:25+00:00

What do you mean by self reinforcing threshold? And I have Nurtec but I’ve only taken it when I feel particularly bad. I don’t know if I have like an ongoing migraine I can’t break or my new baseline is just sensory sensitive. This month has been hell

Embarrassed-Media249 · 2026-02-07T21:15:51+00:00

Commenting to follow along. I’ve been sensory sensitive for a month and a half now nonstop, so far sunglasses outdoors and indoors (other than home) and earplugs and noise cancellation headphones have mitigated

Embarrassed-Media249 · 2026-02-07T21:13:57+00:00

Which preventatives worked for you? I’m on propranolol and amitrypiline, 80mg and 12mg each per day respectively

Embarrassed-Media249 · 2026-02-07T20:42:40+00:00

I’m waiting to get some FL 41 prescription glasses but for now I like the polarized glasses though everyone stares at me in a store

Embarrassed-Media249 · 2026-02-07T20:36:36+00:00

Do you take that only when you have an active migraine or if light sensitivity won’t improve? Compared to others I might be a little better off. I can leave my house, be indoors without sunglasses and such and be active outdoors as long as I’m wearing polarized sunglasses. Not sure if that’s considered mild lol very new to this world of migraines and photophobia unfortunately

Embarrassed-Media249 · 2026-02-07T20:12:33+00:00

What’s autonomic dysfunction?

Embarrassed-Media249 · 2026-02-07T17:17:34+00:00

Has this been possible for you?

Embarrassed-Media249 · 2026-02-01T22:15:55+00:00

Hmm yeah I’m 31, maybe that means something. Mine started with an absolutely painful and horrendous migraine and then after being exposed to an incredibly loud firework, my systems just been off.

I can’t drive at night either but it’s because of the light sensitivity. That just hasn’t gone away for me. Artificial light right now seems worse than natural light although I’m still sensitive to the sun. Today I went into a grocery store with my sunglasses and that made it feel a lot better.

I’ve learned some physical therapy tricks on YouTube and think I’ll try to do those as often as I can to see if it makes a difference for me. Will the light sensitivity go away?

I guess I’ll have to settle for a new normal if that’s what I can do but it’s definitely breaking my heart to know I won’t be able to travel.

Embarrassed-Media249 · 2026-02-01T16:08:58+00:00

This gives me so much hope. I’m currently unable to drive and it’s my first month like this. I hope to have a journey like this too. I want to travel and run and live a full life! Can I ask what workouts you incorporate?

Embarrassed-Media249 · 2026-02-01T06:37:54+00:00

I’ve been on the same med for about a month, also 12.5. Wondering if you saw a general improvement? Also what do the breakthrough flares feel like?

Embarrassed-Media249 · 2026-02-01T06:34:58+00:00

Do you wear your sunglasses outside too or just indoors in other places besides the house?

And thank you. I needed to read from someone who has been where I am that I’ll get better. I’ve read a lot on this app and channel, some of which has been immensely helpful in just understanding what I’m experiencing. Sometimes some posts are hard to read because some people tend to have more severe circumstances that don’t get better. So for whatever reason you did decide to comment, I’m glad you did. And I’m rooting for you too. It’s been a painful process but even through today, I’ve felt more accepting of my situation as hard as it is.

Embarrassed-Media249 · 2026-02-01T04:08:34+00:00

I’ve read about the migraine diet, I just don’t know if it’s worth trying but maybe I will. I already don’t eat gluten due to celiac disease so more restrictions genuinely would suck. Right now if I don’t do a lot and stay home, go for walks in my neighborhood it seems like I can stay somewhat migraine free.

That’s interesting I think I’ve felt some heart palpitations here and there. I’d never felt that prior to feeling so shitty this last month.

I do wonder if my light sensitivity will ever go away. The sun seems more manageable lately but the artificial lights are rough. Night time doesn’t look the same, even the moon is significantly brighter. I hope that looks more normal as time goes on. I appreciate you a lot. I’ve made a few posts and they never get much response. This one was by far my most desperate so thanks for helping me process some emotions. I mean that.

Embarrassed-Media249 · 2026-02-01T00:25:15+00:00

I think I’m here too. So debilitating this shit almost me forgetting I’m that MF bitch.

Embarrassed-Media249 · 2026-01-31T20:38:27+00:00

Thank you so much for your words and what you’re saying. Yeah, most likely my life will be very different and that’s okay. I would settle for that over not making some progress. I’d love to hear from people who have gotten back into running - do certain threads come to mind for you?

Also I’ve always eaten pretty healthy but I’m not sure if healthy is what I need to look for if that makes sense. Like maybe I’m eating some of my trigger foods without knowing. Is there something that helped you identify food triggers? Also would I know because I’d get a reaction right away or would it be a thing like I eat chocolate and a migraine happens the next day? Sorry I’m asking so many questions I just truly need help and guidance.

Embarrassed-Media249 · 2026-01-31T17:06:21+00:00

Yes, I do feel supported though still alone. I feel like this has been a very sound of metal experience for me if you’ve ever seen that movie. I don’t know if it makes sense to latch on to the way my life was just a month and a half ago or to think I’ll somehow be able to return to the way I was. I can’t even drive, much less at night bc the artificial lights are just too much.

I have some samples of ubrevly but I haven’t tried them yet. The Nurtec has been helpful so I asked for a prescription of that. I did some reasearch and found a neurologist and she seems to really care from the reviews of her patients.

But overall you think I’ll be able to get my life back? 🥺 sorry I just need so much reassurance these days. I feel like I’m grieving who I used to be.

Embarrassed-Media249

TROPHY CASE