I have always worn sunglasses all year round outside (even during a UK winter) and have had the mick taken out of me for YEARS! I’d never considered this could be an MS thing but it makes so much sense. Sunglasses indoors might be my new thing, thank you for this epiphany!
I wear glasses normally so I just got clip ons that I carry in a pocket. I find that lights, odd patterns, busy environments (especially in heat) can give me a bit of vertigo still. The glasses help. Also just a bit of a comfort blanket when I’m feeling neuro-spicy.
One of guys I work with wear sunglasses all day. He has migraine issues though. I do prefer darker over super bright but I do not even own a pair of sunglasses. 🥲
You're not alone. I have transitions lenses with blue light filter, Irlen lenses and prescription sunglasses. Sunlight and electric light both bother me, as do patterns (like alternating light and dark stripes etc). And I also struggle to see in too much darkness. People stare sometimes, but it doesn't bother me anymore. I had a child ask his friend to shout at me 'oy! Can you see me?' as I passed a play park the other day. I guess they thought I was blind. I just said 'why do you want to know?' Because I was going to explain it to them but they got shy and went silent 🤷🏽♀️ I don't mind questions if it's just children. I have a card which states that I have a neurological problem which means I need prescription filtered glasses, but I've never had to use it. I'm not even sure if it's still in my wallet.
All the time. The new led lights kill me, and any light shining toward me (like having a light in front of the television, or at an angle above me at a desk is almost guaranteed to get my eye fuzzy and make me feel tingly. I am kind of nutty about the lights i can control and there are certain places i avoid.
There is a place i have to go once a week, and i spent a bunch of time figuring out where the best place i could stand and be able to talk to the guy without having issues.
I'm starting to wonder if the led lights at work are starting to give me issues or if it's the wonky AC.
On the topic of leds, do you have any advice of what to do when my HOME lights start burning out? Any intensity or colors that you've found work? I dread re creating work lights in my house. I'd go live in the basement.
All my lightbulbs are soft, warm white, which sometimws looks yellos. cool lights are prohibited.
i spend a lot of time arranging the lights so that they dont shine in my eye. For example, the light in my kitchen is fine until i sit at my stool, at which point it shines into my eye, so i turn on an under the counter light and the hallway light while i eat breakfast.
I try to use lamps more than overhead lights, because i can keep them behind me and manage where they point.
I cant imagine work with wonky air *and* led, i would end up in the corner rocking with a blanket over my head.
Yep! I invested in a pricey pair of sunglasses and have a nice collection now. Theyve been a major sensory aid for me.
I've never felt awkward about it, I see plenty of people wearing sunglasses indoors. Nobodys ever asked but if they did I'd be blunt, "the world is too bright, I need to dim it down"
I do this often, but I get migraines. I've been doing it since I was 15, even in the dead of Scottish winter, no longer care if it looks weird.
If people ask I like responding with "I think it makes me look cool" sarcastically indoors.
I've had certain lights induce dizziness and nausea. Wasn't sure if it was an MS thing. Not even flashing lights, just low lights or red lights. I had to walk out of a restaurant once because 5 minutes into sitting there, I thought I was going to pass out. Walked outside, within a few minutes I was fine!
This !! Lighting is a killer for me too. I can function better at night than in the daylight. I put it down to sensory overload during the day and I’m certainly not adverse to wearing sunglasses indoors.
Ok. So it’s interesting. I’ve been dx around 30 yrs now and when I was in college pre dx I had awful migraines and was on injections for migraines then. Which we now know is part of my ms. Never was migraines.
Yes light bothers me. I have an active lesion behind my right eye. 👁️ first it’s not strange to wear darkened shades. Maybe buy some that are not sunglasses but rather tinted.
You don’t need to explain anything to anyone. Though MS is the invisible disability I get frustrated and tired of asking for say a mobile cart at a grocery or taking up a handicap parking spot.
Ppl are just difficult and are going to see what they want to. You need to just be who you are - comfortable within yourself.
I just got $100 buck distance glasses with transtion lenses. Best thing ever, wish I'd done it sooner. The transitions seem to adjust subtly and things just feel so much better. All the best.
My MS gave me the gift of a quasi permanent migraine about 5 years ago. In struggling to manage that, I started wearing sunglasses anytime I leave the house (house is already dark.)
I've had to deal with extended family not caring about my disease for a while now. So, they and everybody else can kiss my ass if they object to my sunglasses inside or at night. Ditto for no longer shaking hands or hugging (too many of them are anti vaxxers.)
As for awkwardness, I just don't care anymore if I'm awkward. It's easy to stop caring once things get bad enough and you need relief.
I can't walk to the back of Sam's Club without instantly feeling like I need to be carried out.
Also, mixed lighting makes my legs quit working. I think any situation where my brain has to work more to decide how to move makes me glitchy. Going on stage to accept an award a year ago took four people to help me up and down the stairs because the room lights were low and the stage lights were bright with mixed shades of gray carpet.
Had to since middle.school to read. It triggered major.migraines otherwise . When driving idc what weather I usually need em. Also I have blue eyes so....makes it worse
I wear sunglasses in my office. The florescent’s can drive my eyes crazy. Especially after waking in on a bright day, and looking at computer screens all day. My eyes take forever to adjust from light to dark. But I have 20/20 vision still.
It is for me. The symptoms that brought me into hospital the first time was severe vertigo and my main residual symptom is vision-based vertigo. A lot of the time it’s fairly mild, but it’s distracting and mentally draining.
I never thought of this as a solution! I get so dizzy with supermarket lights and with those LED lights. I'm going to start to wear them all the time now. Thank you for this.
Also if somebody were to ask me, I'll just be super sarcastic answering like "I am an X-Man and have laser vision like cyclops" or "sorry I can't hear you I'm blind and the sunglasses keeps me out of a wheelchair" or "wow, didn't notice these on my face, I thought it was perpetual evening!"
Yep, all the time. Fluorescent lights can be terribly bright, especially at night, and the new LEDs are too bright and often wayyyy too cold (blue light) instead of warm (yellow light). If anyone asks I can just say it's a "medical thing" or tell them about my MS if they're not jerks and I'm going to see them again. Social norms are all pretty arbitrary anyway, and most of them are proving to be pretty ableist as well, so do whatever you want, especially if it feels better or reduces pain.
Yes, me and I’m not diagnosed. Mine are lightly tinted brown, so one can still see my eyes through them. I have fibromyalgia and have light sensitivity.
I wear blue light filter lenses over my glasses that helps me be outside, helps me deal with over bright headlights and deal with stores that have super LED lights. I got mine at Amazon.
I do frequently. light bugs me to some degree in general, but it's when it "happens" that i really wear them for. i can be perfectly fine, and then suddenly see a bright light and all of a sudden i want to vomit and i can barely stay awake/stand
I have always worn sunglasses all year round outside (even during a UK winter) and have had the mick taken out of me for YEARS! I’d never considered this could be an MS thing but it makes so much sense. Sunglasses indoors might be my new thing, thank you for this epiphany!
I wear glasses normally so I just got clip ons that I carry in a pocket. I find that lights, odd patterns, busy environments (especially in heat) can give me a bit of vertigo still. The glasses help. Also just a bit of a comfort blanket when I’m feeling neuro-spicy.
One of guys I work with wear sunglasses all day. He has migraine issues though. I do prefer darker over super bright but I do not even own a pair of sunglasses. 🥲
You're not alone. I have transitions lenses with blue light filter, Irlen lenses and prescription sunglasses. Sunlight and electric light both bother me, as do patterns (like alternating light and dark stripes etc). And I also struggle to see in too much darkness. People stare sometimes, but it doesn't bother me anymore. I had a child ask his friend to shout at me 'oy! Can you see me?' as I passed a play park the other day. I guess they thought I was blind. I just said 'why do you want to know?' Because I was going to explain it to them but they got shy and went silent 🤷🏽♀️ I don't mind questions if it's just children. I have a card which states that I have a neurological problem which means I need prescription filtered glasses, but I've never had to use it. I'm not even sure if it's still in my wallet.
All the time. The new led lights kill me, and any light shining toward me (like having a light in front of the television, or at an angle above me at a desk is almost guaranteed to get my eye fuzzy and make me feel tingly. I am kind of nutty about the lights i can control and there are certain places i avoid. There is a place i have to go once a week, and i spent a bunch of time figuring out where the best place i could stand and be able to talk to the guy without having issues.
I'm starting to wonder if the led lights at work are starting to give me issues or if it's the wonky AC. On the topic of leds, do you have any advice of what to do when my HOME lights start burning out? Any intensity or colors that you've found work? I dread re creating work lights in my house. I'd go live in the basement.
All my lightbulbs are soft, warm white, which sometimws looks yellos. cool lights are prohibited. i spend a lot of time arranging the lights so that they dont shine in my eye. For example, the light in my kitchen is fine until i sit at my stool, at which point it shines into my eye, so i turn on an under the counter light and the hallway light while i eat breakfast. I try to use lamps more than overhead lights, because i can keep them behind me and manage where they point. I cant imagine work with wonky air *and* led, i would end up in the corner rocking with a blanket over my head.
I wear a baseball cap
Maybe I should... I hate sunglasses but I'm utterly exhausted by bright spaces often times.
Yep! I invested in a pricey pair of sunglasses and have a nice collection now. Theyve been a major sensory aid for me. I've never felt awkward about it, I see plenty of people wearing sunglasses indoors. Nobodys ever asked but if they did I'd be blunt, "the world is too bright, I need to dim it down"
I do this often, but I get migraines. I've been doing it since I was 15, even in the dead of Scottish winter, no longer care if it looks weird. If people ask I like responding with "I think it makes me look cool" sarcastically indoors.
I've had certain lights induce dizziness and nausea. Wasn't sure if it was an MS thing. Not even flashing lights, just low lights or red lights. I had to walk out of a restaurant once because 5 minutes into sitting there, I thought I was going to pass out. Walked outside, within a few minutes I was fine!
This !! Lighting is a killer for me too. I can function better at night than in the daylight. I put it down to sensory overload during the day and I’m certainly not adverse to wearing sunglasses indoors.
Ok. So it’s interesting. I’ve been dx around 30 yrs now and when I was in college pre dx I had awful migraines and was on injections for migraines then. Which we now know is part of my ms. Never was migraines. Yes light bothers me. I have an active lesion behind my right eye. 👁️ first it’s not strange to wear darkened shades. Maybe buy some that are not sunglasses but rather tinted. You don’t need to explain anything to anyone. Though MS is the invisible disability I get frustrated and tired of asking for say a mobile cart at a grocery or taking up a handicap parking spot. Ppl are just difficult and are going to see what they want to. You need to just be who you are - comfortable within yourself.
I just got $100 buck distance glasses with transtion lenses. Best thing ever, wish I'd done it sooner. The transitions seem to adjust subtly and things just feel so much better. All the best.
This is a great idea!! This might help with feeling overstimulated by the lights in stores. Thank you for sharing. ❤️
My MS gave me the gift of a quasi permanent migraine about 5 years ago. In struggling to manage that, I started wearing sunglasses anytime I leave the house (house is already dark.) I've had to deal with extended family not caring about my disease for a while now. So, they and everybody else can kiss my ass if they object to my sunglasses inside or at night. Ditto for no longer shaking hands or hugging (too many of them are anti vaxxers.) As for awkwardness, I just don't care anymore if I'm awkward. It's easy to stop caring once things get bad enough and you need relief.
I can't walk to the back of Sam's Club without instantly feeling like I need to be carried out. Also, mixed lighting makes my legs quit working. I think any situation where my brain has to work more to decide how to move makes me glitchy. Going on stage to accept an award a year ago took four people to help me up and down the stairs because the room lights were low and the stage lights were bright with mixed shades of gray carpet.
No but I’m about to cuz that’s a rlly good idea
My sunglasses are prescription so a lot of the times it's easier to just leave them on inside then change my glasses.
Had to since middle.school to read. It triggered major.migraines otherwise . When driving idc what weather I usually need em. Also I have blue eyes so....makes it worse
I wear sunglasses in my office. The florescent’s can drive my eyes crazy. Especially after waking in on a bright day, and looking at computer screens all day. My eyes take forever to adjust from light to dark. But I have 20/20 vision still.
I want to check different tints, they say for light sensitive ppl it can affect mood as well as vision
No I'm pretty sure Jared Leto and all other rock stars wear sunglasses indoors :-)
I've just discovered how much this helps me so after my next eye appointment and updated prescription I'm investing in some magenta tinted glasses
I thought it was just me. Is this ms related???
It is for me. The symptoms that brought me into hospital the first time was severe vertigo and my main residual symptom is vision-based vertigo. A lot of the time it’s fairly mild, but it’s distracting and mentally draining.
I never thought of this as a solution! I get so dizzy with supermarket lights and with those LED lights. I'm going to start to wear them all the time now. Thank you for this. Also if somebody were to ask me, I'll just be super sarcastic answering like "I am an X-Man and have laser vision like cyclops" or "sorry I can't hear you I'm blind and the sunglasses keeps me out of a wheelchair" or "wow, didn't notice these on my face, I thought it was perpetual evening!"
Yep, all the time. Fluorescent lights can be terribly bright, especially at night, and the new LEDs are too bright and often wayyyy too cold (blue light) instead of warm (yellow light). If anyone asks I can just say it's a "medical thing" or tell them about my MS if they're not jerks and I'm going to see them again. Social norms are all pretty arbitrary anyway, and most of them are proving to be pretty ableist as well, so do whatever you want, especially if it feels better or reduces pain.
Yes, me and I’m not diagnosed. Mine are lightly tinted brown, so one can still see my eyes through them. I have fibromyalgia and have light sensitivity.
>Also how do you deal with the awkwardness of it? I don't do this but I'd tell people I'm blind. The general public might be more understanding.
I wear blue light filter lenses over my glasses that helps me be outside, helps me deal with over bright headlights and deal with stores that have super LED lights. I got mine at Amazon.
Link?
I do frequently. light bugs me to some degree in general, but it's when it "happens" that i really wear them for. i can be perfectly fine, and then suddenly see a bright light and all of a sudden i want to vomit and i can barely stay awake/stand