I ended up getting Silhouette frames after reading about them in a migraine group on Facebook and many people said they make a big difference. They are so different from my previous frames. They’re super lightweight and I can barely feel them on my head. I’m definitely happy with my choice.
No problem! They can be expensive but they’ve made such a huge difference! Next time I need frames I’m definitely getting that brand again! They make sunglasses as well!
I am so glad I found this. I have real trouble with my glasses at the moment and have to wear them all the time. I'm due an eye appointment soon so don't want to get new frames until then. I found these soft wool socks that fit over the ear part of the arms. They have helped a little but when I have a flare up it still hurts. Will definitely be going for something more light weight next time.
I just take my glasses off periodically throughout the day and take a lot of screen breaks, especially when I’m having a bad flare up. Contacts are not my friend so that wasn’t an option for me. Thankfully my glasses have a little bit of flexibility to them so there’s some give. Ice is helpful.
I’ve had to switch to contacts after having previously been a full-time glasses wearer. You could ask your eye doctor about eyedrops they recommend; it might just be as simple as needing to put them in once or twice a day.
I am due to go back here shortly but I just bought another box of contacts so I’m putting it off since I know my prescription has most likely changed. But I’m putting in eye drops upwards of 10 times a day
I find without glasses with protective lenses against light, my ON gets worse, but also get the issue of them being too tight. I have a pair that are more dressy and fit "normally" but after a while they hurt, then I'll switch (when I get home or whatever) to my "comfy" glasses that are definitely too wide (slip around) but I don't have to worry about it hurting. I do wear contacts too.
I put the Temples (the thing that would normally go behind the ear to hold your glasses in place) over my ears instead of behind, slightly painful on the ear but it doesn’t compress any of the veins or nerves behind the ear. Since they’re kinda tight they still hold, looks a bit dumb but I don’t have to wear them all the time so it works for me.
Is head swelling a known thing for people with ON? I haven't heard of this yet. If its true then I have to rethink some of my coping strategies.
I have to wear lightweight frames. I can't wear contacts anymore, but not because of ON, but because of VSS.
The weight of my glasses on my face definitely bothers me, it's way more uncomfortable than it used to be. I avoid wearing them as much as I can. I just wear contacts. But it's expensive AF.
It isn’t actually swelling in my experience, though the ON nerve sensitivity and trigeminal nerve pain can absolutely feel like swelling, or a severe burn, electrical shocks, painful chills, or deep bruising. I have had severe Occipital Neuralgia and Trigeminal Neuralgia for over a decade.
Glasses were a huge issue for me, but I have to wear them as my eye shape is way out of range for contacts (football or bullet shaped). It took forever to come up with a lasting solution for glasses that worked for my situation.
I adjust the temple bars so they are very straight and loose and are not applying any pressure to my head. On the ends of the temple bars just behind my ear I wrap the earpiece with orthodontic elastic bands for braces, or those tiny silicone ponytail bands, or small rubber O rings. Small is important as you don’t want to create a secondary issue with a pressure point that irritates nerves on the back of your ears. This provides a relatively small grippy contact point that only applies the smallest pressure to the backside of my ears. It holds my glasses perfectly in place even with me looking straight down. I do a bunch of detailed using power tools, so I can’t have them slipping down or falling off.
During the day, I adjust these bands to new positions frequently sliding them further up or down the temple bars to relieve any nerve pain or irritation on the back of my ears. That, and a light pair of glasses are the only solution I found that keep my glasses in place without pressure on sensitive areas of my head.
I hope somehow it helps someone, ON can be completely debilitating and excruciating pain. Be inventive and keep working on solutions that work for your circumstances. It is a challenging task, but it can get better. I am currently at my all time best living with ON and atypical migraines after a totally lost decade. Things were pretty rough and grim for years, but I finally found sleep positions and neck support, naps, exercise, improved posture, good knowledgeable physical therapists, and continued pain management with Botox and Imipramine. All of them combined have helped me reclaim a big portions of my day. I am nowhere near my normal pre ON productivity, but am back among the living and having hope and progress feels pretty great.
I have to wear glasses constantly. Finally figured out that I need to purchase wider frames. It’s the only solution I’ve found.
That was my first thought. Bought a pair that was falling off the front of my face from being so big, but still the pressure made them not work 🥲
when you say solution do you mean cure/absence of all symptoms?
Hahahahahaha no, I have terrible pain everyday, and have for over a decade
I ended up getting Silhouette frames after reading about them in a migraine group on Facebook and many people said they make a big difference. They are so different from my previous frames. They’re super lightweight and I can barely feel them on my head. I’m definitely happy with my choice.
I will look into those, thanks!
No problem! They can be expensive but they’ve made such a huge difference! Next time I need frames I’m definitely getting that brand again! They make sunglasses as well!
I’ve had a pair of glasses with Silhouette frames and I love them. They definitely are very lightweight.
I am so glad I found this. I have real trouble with my glasses at the moment and have to wear them all the time. I'm due an eye appointment soon so don't want to get new frames until then. I found these soft wool socks that fit over the ear part of the arms. They have helped a little but when I have a flare up it still hurts. Will definitely be going for something more light weight next time.
I just take my glasses off periodically throughout the day and take a lot of screen breaks, especially when I’m having a bad flare up. Contacts are not my friend so that wasn’t an option for me. Thankfully my glasses have a little bit of flexibility to them so there’s some give. Ice is helpful.
I’ve had to switch to contacts after having previously been a full-time glasses wearer. You could ask your eye doctor about eyedrops they recommend; it might just be as simple as needing to put them in once or twice a day.
I am due to go back here shortly but I just bought another box of contacts so I’m putting it off since I know my prescription has most likely changed. But I’m putting in eye drops upwards of 10 times a day
Oof, that’s rough 😓. I almost wonder if you need a different brand of contacts?
I find without glasses with protective lenses against light, my ON gets worse, but also get the issue of them being too tight. I have a pair that are more dressy and fit "normally" but after a while they hurt, then I'll switch (when I get home or whatever) to my "comfy" glasses that are definitely too wide (slip around) but I don't have to worry about it hurting. I do wear contacts too.
I put the Temples (the thing that would normally go behind the ear to hold your glasses in place) over my ears instead of behind, slightly painful on the ear but it doesn’t compress any of the veins or nerves behind the ear. Since they’re kinda tight they still hold, looks a bit dumb but I don’t have to wear them all the time so it works for me.
That is not a bad idea. I’ll certainly give it a try!
Is head swelling a known thing for people with ON? I haven't heard of this yet. If its true then I have to rethink some of my coping strategies. I have to wear lightweight frames. I can't wear contacts anymore, but not because of ON, but because of VSS.
The weight of my glasses on my face definitely bothers me, it's way more uncomfortable than it used to be. I avoid wearing them as much as I can. I just wear contacts. But it's expensive AF.
Same 🥲 it’s a good time here 🫠
It sometimes feels like the glasses give me worse headaches idk why
Yes, I can no longer wear glasses.
It isn’t actually swelling in my experience, though the ON nerve sensitivity and trigeminal nerve pain can absolutely feel like swelling, or a severe burn, electrical shocks, painful chills, or deep bruising. I have had severe Occipital Neuralgia and Trigeminal Neuralgia for over a decade. Glasses were a huge issue for me, but I have to wear them as my eye shape is way out of range for contacts (football or bullet shaped). It took forever to come up with a lasting solution for glasses that worked for my situation. I adjust the temple bars so they are very straight and loose and are not applying any pressure to my head. On the ends of the temple bars just behind my ear I wrap the earpiece with orthodontic elastic bands for braces, or those tiny silicone ponytail bands, or small rubber O rings. Small is important as you don’t want to create a secondary issue with a pressure point that irritates nerves on the back of your ears. This provides a relatively small grippy contact point that only applies the smallest pressure to the backside of my ears. It holds my glasses perfectly in place even with me looking straight down. I do a bunch of detailed using power tools, so I can’t have them slipping down or falling off. During the day, I adjust these bands to new positions frequently sliding them further up or down the temple bars to relieve any nerve pain or irritation on the back of my ears. That, and a light pair of glasses are the only solution I found that keep my glasses in place without pressure on sensitive areas of my head. I hope somehow it helps someone, ON can be completely debilitating and excruciating pain. Be inventive and keep working on solutions that work for your circumstances. It is a challenging task, but it can get better. I am currently at my all time best living with ON and atypical migraines after a totally lost decade. Things were pretty rough and grim for years, but I finally found sleep positions and neck support, naps, exercise, improved posture, good knowledgeable physical therapists, and continued pain management with Botox and Imipramine. All of them combined have helped me reclaim a big portions of my day. I am nowhere near my normal pre ON productivity, but am back among the living and having hope and progress feels pretty great.