My wife is diagnosed MS relapsing remitting since 2000. On Copaxone, gabapentin, baclofen, trazodone.... My wife is currently stable, no active lesions. However, my poor wife is unable to tolerate lights for very long. No sunny days, no movie theater, not even the television or pc screen at home. When the light exposure gets to her it presents as shuddering that becomes strong and effects her ability to articulate, like she is doing an impression of Katherine Hepburn. Anyone with experience with this know how to improve the situation aside from the obvious-avoid strong light. I have recommended trying to wear her sunshades but she has not. This has been going on for a long time and getting worse. My wife just wants to stay inside and do nothing and that is not living, you know what I mean? I wish I could help her. Any idea will be appreciated.
Light sensitivity even television and pc... - My MSAA Community
Light sensitivity even television and pc screen
BUZZ1397 Yes I have also have trouble with light. My eyes are processing at different speeds and any flashing, strobing, or quick movement on the TV makes my eye throb and leads to a migraine. I also can't stand the bright light outside. The things that I've found to help are: 1)dark, polarized, wrap around sunglasses. 2) a very large brimmed hat. I never leave the house without both of these. (and eye masks and eye patches mentioned below)
3) We have a PIC OFF button on our TV remote. We had to look high and low to find a TV with this. We finally found this feature on a Sony Bravia. It allows me to black out the picture when it gets too flashy, like commercials, or quick cut edits. I do best watching old TV shows before they started to do this. Black and white shows are the easiest for me to watch.
4) On really sunny days, we turn the house into the "bat cave". We have black out shades or curtains on most windows that I can quickly and easily close.
5) We've gotten a sun screen exemption permit from the motor vechicle place that allows us to put tint the windows as dark as we want on our car. The Drl had to sign this. We've done the side and on a strip across the front windshield on my side of the car. We we take a long trip, we totally block out my side window with black paper.
6) I also have several black out eye masks and eye patches that I have with me when I'm out and even use these at home when needed.
I hope this helps. I've been dealing with this problem for 10+ years.
I may get my wife to get on the pc if she can for long enoug to communicate with you.
Thats great advice! I struggle with this as well. I may try these things! Thank u!
Hi BUZZ1397, I have light sensitivity for many years, it was worse before, I could not look the computer because of the bright light, causing me headache. Now I use BlueLight Filter app to control the bad blue light which interfer with the sleep waves. I had installed in my PC but could not adjust correctly.All pc has filters to reduce the strong light. My glasses are all Transition lens to reduce light and anti glare. I recently bought night vision glasses for driving because I was having headache during drive evening time. For my surprise really works cutting my headache in minutes.I tested many times to see if it was just coincidence. The night vision is a yellow Ultra violet polycarb lens. I also bought an extra visor below the car visor to extra cut sun light. It is only for sunlight and calm down my eyes. I also change my sun glasses adding mirror lens to protect more against glare. And using hat to reduce sun over the eyes for sure, all king of flexible hats foldable. At home use daylight spextrum LED better for the eyes because soft light force our vision.
In addition I have extra reading glasses for reading, computer and long distance. All in one, it is different than only progressive.It has more space for reading intermediary distance.
It really works to use sunglasses? I am right about something for once. Wait until I get her to read this. I can't wait to hear her say, "Call around and find where to get night vision lenses for my frames honey." 
Thank you so much. I hope to get her online to communicate with you to express her thanks.
Hi BUZZ1397. Iam reading your reply only now. This yellow glasses night visor brand name is KNIGHT VISOR. I order from Amazon, it comes with all details how works blocking the UVlights, has nice case to carry and inside case and clip if you wants. It goes around to prevent side light in your eyes. It is polycarb lens, sport style,very light to put over regular preacription glasses. Yesterday I went to my optical to make new glasses with Transition lens, and I said I do not want to use gray color anymore. The technitian said to me that between the brown and green lens, the brown is better clear view because has the yellow spectrum in the transition lens. Then seeems like one more reason to keep my exclusive yellow lens ready to use when I drive for night vision because in less than one minute cuts my front headache.
What a great idea you have given me. Transition Lens! Had not thought of that! AJ has sunglasses and does wear them driving or in car, but will not consider them in house. I have suggested. Thank you.
Miriade was searching...which blue lite filter app do u use? Thanks!
@BUZZ1397, I've had light sensitivity for years, though not nearly as severely as your wife. For years I wore tinted glasses, and there were years when I wore prescription sunglasses outdoors at all times and indoors some of the time--brighter days or in the early morning hours, when the light seemed to bother me the most. Nowadays I still wear the rx sunglasses outside most of the time but on cloudy days I can get by without them. I'm not sure why I improved a bit. I have cataracts, and that is a condition that causes light sensitivity. Has your wife been checked carefully by an ophthalmologist? There are quite a few conditions involving light sensitivity, and there are some remedies. I could have cataract surgery (but haven't done that yet), and another condition I have is dry eye. That too can cause light sensitivity. I use drops for that several times a day. Some of my light sensitivity is probably due to MS, and your wife may be in the same boat. But it's worth having an eye doctor take a look, just to do whatever can be done to help.
Thanks, it has been awhile since she had her eyes examined.
Dry eyes also cause sensitivity to light and all king of irritation and agravation of catarata. I keep with myself eye drops with some variety of ingredients depends of the time of the day. I use also Systane eye drops, Systane gel evening time for better comfort, Refresh Tears, Similasan Stye Eye Relief and Dry Eye Relief(homeopathic). I use variety of eye drops to keep my eyes hydrated without same ingredients ,better results without vasocontrictor or belzalconio clorid( I am allergic in this preservative in eye drops).
Go to ophthalmologist. Could be uveitis. I have it and light sensitivity.
BUZZ1397 i have noticed a fairly significant intolerance to bright sunshine more recently but no where near your wife's aversion. Why won't she wear the sun glasses? Has she seen an eye doc?
Buzz1397 Tell your wife she is not alone. The song " I WEAR MY SUN GLASSES AT NIGHT "is so true, i also wear them in the day. Fire trucks, police, emergency vehicles nauseate me also...add sound and I may need a "Depends". My neurologist it presents as a migraine, but my ability to coordinate my body is almost hysterical "Rug Rats-Baby Walk" but it is happening to me, and scares the crap out of everyone around me. MS, makes you find your "NEW NORMAL". Your wife will discover hers. I watch t.v. but use subtitles. high definition action movies i read words because i can't process visuals...and they hurt my head, some movies. Be patient buy great sun glasses, and ear plugs...sensory over load with "LIGHTS " BE BLESSED!
Having read all your post gives me hope in the possibility of finding a workable solution. AJ has all this! Yes, we go to Ophthalmologist, every year. Our next appointment is in May, 2017. I will definitely bring up these concerns. I made comment above, great idea about Transitions Lens! I will certainly suggest this to AJ. Thank you Mary
BUZZ1397 In addition to all the good ideas from others, try to arrange a consultation with a neuro-opthamologist. Your wife's neurologist may know of an eye doctor with this specialization in your area. I located mine at a large university teaching hospital one of two institutes in my region with this specialty. My light sensitivity is mild compared to your wife's, but there is help available. MS is isolating enough without creating a condition that makes her a prisoner of darkness. I hope this helps you both.
Hello! I have extreme photo sensitivity due to an injury from eye speculum misuse during eye cataract surgery which caused a lot of screaming on my part from the nerves and muscles being injured during surgery and then a neglected eye infection the day after the surgery lasting 5 months. I made repeated visits to his office without receiving care for the infection. No other opthalmologists would accept me as a patient because they said it was surgeon's responsibility not theirs.The surgeon was in a hurry that day on Dec 20, 2020.
Apparently there was a patient cancelation previous to my appointment. The surgery center took me in immediately and said the Dr. was ready and they had only 15 minutes for prep, yet I had been promised 1 1/2 hours for prep. I complained to the hospital about abuse from rushing during prep. I have been a shut in for 2 years due to illness from occipital neuralgia caused from extended infection causing lowered immune system.
Sorry for the long story. There's a lot more but I just would like to know where you found a good eye neurologist.
I'm in Kansas City area. There are none here except the eye neurologist who sent me to pain management at KU Med. My pain management Dr. doesn't think I need a neurologist. 🤯
Thank you for listening if you made it through this.
Warmest Regards,
Meribeth McClellan
The neuro-ophthalmologists I have been helped by were at Keck/USC eye center in Southern California and currently Dr. Andrew Collins in Charlottesville, VA. The Jules Stein Eye Clinic at UCLA, also in Southern California, is also reputed to be excellent. I realize that none of these are close to your current location, but since vision is such a blessing (and such a loss when damaged), it might be valuable to search farther from home. I also do understand that when a doctor makes an error in treatment, other doctors are reluctant to get involved. So, I probably would not discuss my prior history unless compelled to disclose it.
Hello, thank you for your quick reply. I am so glad you shared this information with me. You are absolutely correct about disclosure of previous events. Do you have any suggestions about what to share except my extreme photophobia when contacting the sources you mentioned?Have a good evening.
Meribeth
If I were in your position, I would merely describe my symptoms and ask to be seen. You primarily want help with what is troubling you, there's no initial need to say much more than local doctors have not been able to find answers. I hope you find the help you need..
Be careful with transitions lenses. I believe it takes UV light to make them darker. Mine don't darken in my car unless I have the sunroof open (best) or the windows open (not so good). I have Polaroid lenses for driving. Problem with them is it makes it hard to see my iPhone GPS due to the polarization of the iPhone glass.
Next time it will be just VERY dark grey tinting for me...
It's right. Transition lens do not work in the car because the car glass filter the UV which makes the reaction for the transition lenses. I made other glasses with antiglare, hi index, and mirror lenses that are really good for dont cause me headache for excess light. I also bought a semi translucid brown shade to use below the front shade reducing much more the glare special when the sun is very low and the shade do not cover. It is hang with a clip over the regular sun shade. I see and drive looking tru the light brown anti glare shade.
I have horizontal nystagmus which causes the same symptoms as what your wife is having. I can't be on my phone for very long or watch tv during an episode. I need to sleep with an eye cover because even a small light from the DVD player can be extremely annoying to my eye. Sunny days, are my favorite and love to be outside, unfortunately now I need those huge black sunglasses that go over my eye glasses So I can step outside. If I don't have my sun glasses I can barely open my eye and get a tremedous headache! I also fine myself staying inside a lot. And you are absolutely right....this is not life of you can't get out and about.
I'm 36 and my kids tell me almost everyday that I walk like grandma😳😕
Is it both her eyes or just one?
The sunglasses I wear help me out a lot and I would suggest seeing a Neuro Ophthalmologist they can perscibe special sun glasses and such.
I wish you both luck and many blessings.
Stephanie
I had the same thing. I went on and had HSCT on April/May. My eyesight is not perfect but I can tolerate the sun, computer screens, and all sorts of bright lights with a $5 pair of sun glasses. No more 28 day infusions really takes the cake.
The latest is, we went to her neuro and an eeg is scheduled for the 14th.
I despise bright sunlight, which is awkward for someone living in California! It can be quite nauseating! I find my vision dissipates in the intense glare, making me think that what I'm seeing is shimmering in waves of heat!
I have that happen as well! But even at nite i can get double vision. I am blessed to get to see 2 full moons side by side sometimes!
Fluorescent and LED light bulbs KILL my head. I buy incandescent light bulbs from amazon. Check the seller rating for returns, and avoid sellers whose reviews say all arrived broken. Pay the extra cost to get bulbs that don’t arrive with the filament broken. Don’t fall for incandescent “replacements”, which are still LED. I use very low watt bulbs also. When my migraines hit, I wear sunglasses in the house.
I’m not going to try to lie. I get I. This funk every now and then. Look into shirts that are light weight with UV protection. Sun shades. I usually feel better if I get out of the house.
Hi Buzz, I was injured by a Cataract surgery speculum that smashed part my Trigeminal Nerve (V1 and V2). My photophobia is very limiting. But, I bought Avulux overglasses because they wrap around and block peripheral light. I started out with a cheaper brand. But Avulux blocks Red, Blue, Violet, and Amber. They are great. Add a floppy brimmed hat and I'm ready to walk my dog or go to some stores or restaurants, especially if they have high ceilings so the light is not so bright. I hope this helps. And yes, I have bilateral Trigeminal Neuralgia from the damage 3 years ago. Meribeth
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