Photophobia

Join the Conversation on
Photophobia
421 people
0 stories
28 posts
  • About Photophobia
  • Explore Our Newsletters
  • What's New in Photophobia
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    The Incandescent Light Bulb Ban Harms Many

    I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

    Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

    There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

    Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

    #Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

    Post

    Lucky

    Every morning when I don't want to get out of bed (I have 20 conditions), I have to tell myself over & over, how LUCKY I am to still be alive. #HEDS #addisons #fibromyalga #indwellingcatheter #LungDisease #boweldisease
    #svt #thyroidfailure #anaemia #Photophobia #Cataracts #SjogrensSyndrome #BreastCancer #metabolicmyopathy #fibromyalga TMD/TMJ etc....

    Post

    A Miracle, A Solution… I am so happy! #Photophobia #VisualImpairment #Blindness #Migraines

    Update: A miracle has occurred sooner than expected! My new corrected tinted filter and filter cap for my glasses are in and am very grateful as insurance covered the cost. All I need to do now is get over this cold so I can pick them up! This is such a huge relief as I haven’t been able to go out in months without #Migraines , #Photophobia , eye pain, meaning I wasn’t really going out. And now I can be pain free very soon! Now I just need to advocate and figure out how to get the other custom pair that is for everything else that isn’t distance magnification or telescopic use covered!

    Post

    Oh… #Photophobia

    This past month my #Photophobia has been horrendous. It’s been so bad that I can’t even go outside most days even if it is cloudy because it is too bright for my eyes to handle. This leads to #Migrane I’m already #LegallyBlind / #functionallyblind / #VisuallyImpaired so… now I have too keep my eyes completely shut which just makes things harder. Thankful for my #MobilityAids This has lead to a #Depression episode and of course my #Anxiety has been troubling a bit too. Mainly my #Trich has gotten out of hand because of the anxiety. But, good things are coming as I did have a tint evaluation for specialized glasses for the #Photophobia now we just play the waiting game and hope I can somehow obtain enough money for the second specialized pair that I can use for daily tasks once I find out the cost!

    Question
    See full photo

    What kind of eye masks have you tried?

    You know you live with migraine when one of your favorite holiday gifts is a new eye mask. My parents got me a weighted one (called the “eye pillow”) from the compression brand IMAK. It’s full of ergoBeads to create a very subtle massage feel. The box says it can provide relief from migraine, eye strain, post-surgical pain, puffy eyes, and sinus pain. (Bonus: You can pop it in the freezer for a chilling effect as well!)

    Since I spend a lot of my time on screens talking to you lovely humans, I am really looking forward to winding down my day with this tool.

    Do you use an eye mask regularly? Do you sleep in one? Does it help with your migraine symptoms, especially if you struggle with photophobia? Drop your favorite (or least favorite) brands in the comments below. #ChronicVestibularMigraine #chronicmigraine #ChronicPain #ChronicIllness #Fibromyalgia #Lupus #Disability #Endometriosis #Migraine #ClusterHeadache #SinusPain #AcuteStressDisorder

    Post
    See full photo

    Seven hours on a stretcher in an ambulance - viral meningitis

    Seven hours on a stretcher in the back of an ambulance after being blue lighted to the emergency room.
    I can not fault the ambulance staff, they were brilliant. Kept my pain at bay, tried to keep my spirits up as I apologised for delaying them getting their next patients. They reassured me that the system was at fault & needed fixing to stop these long delays.
    I was then admitted to the ward & given my first chance to go to the loo.
    Bedpan full & the nurse spilt a bit and I had to sit in it for another 7 hours & yes even through all the pain I was embarrassed.
    Little did I know I would have to wait another seven hours until my next visit to the bathroom !
    Subjected to a barrage of tests & scans to decide what was wrong
    Doctors were very loathed to do tests & plenty of umm-ing and arh-ing went on.
    The dreaded lumber puncture was to be done, in came a man with a clipboard & calculator. Weight & height taken he then proceeded to tell me that it would be difficult to do a lumber puncture because “I have a fat spine “ ? A what ? Yep that was correct, I heard correctly. I assured him I did have some fat on my body but pretty sure people much larger than me have lumber punctures. I am not obese by a long way. He abruptly disappeared.
    I was then transferred to another ward
    Eighteen hours after I left my home a consultant came and I had to repeat myself for the fifth time. I had photophobia my head was about to explode, my neck stiff painful joints & temperature. He examined me told me a lumber puncture was not necessary, that I had viral meningitis, possibly caused by contact with someone who has had their covid vaccine. Oh the joys of a failing immune system. I have been advised not to have the vaccine because of my health conditions & even though the meningitis is awful ( fith time I have had it !) I would not want to risk the vaccine.
    I guess I have been gifted as where I live is so remote & now I know just how bad this can make me without the injection, then masks & full precautions will be taken even though rules have relaxed in England & Wales.
    Fixing one thing can break another. The world health organisation are aware of a link between the vaccine & meningitis. They are monitoring the situation.
    I am home in my own bed & feeling awful but the antibiotics are starting to work. My body will make me pay for the use of antibiotics but when needs must it’s the lesser of two evils.
    I knew I was bad but never thought it would be viral meningitis again.
    So after the embarrassment, knock to my confidence & esteem in the knowledge that I have a “fat spine” I will retreat and lick my wounds & try to muster up enough strength to keep fighting.
    I did not choose my body to be disabled with various illnesses but I have been made to feel ashamed &embarrassed about it.
    I might just be feeling a touch delicate right now & not have taken these things to heart but had to express myself as alway in writing
    #Viral #AutoimmuneDisease #Spoonie #Pain

    Post

    Anyone who has gone off disability but still have chronic illness?

    I don't know how to make life work living on disability--especially after I lose my mom's insurance. I looked at the figures for social security and I can only make $1260 gross income before losing my disability status, most of which would remove my SSI payment. I'm good at a lot of things, but haven't worked before, I wasn't able to finish more than a year of college, can't do demanding physical labor (no 40lbs for me), and can't be stuck all day in one position. I don't know if I'm looking for solutions, just looking for people and guidance on how to navigate trying to find work after being disabled. #Depression #Anxiety #Disability #EhlersDanlosSyndrome #Photophobia

    Post

    Ocular Manifestations of EDS #EhlersDanlosSyndrome

    I have to get glasses for the first time today. Doing last minute research because the severity of my poor vision changes

    I came across this at the link included. There us also a kindle unlimited book (by I think the same author. If you have KU you can borrow it, if not it is 2.99
    Ig coveres these issues in more depth

    totaleyecare.com/ocular-complications-ehlers-danlos-syndrome

    How do I know glasses will help / prescription will stay the same if blurriness levels change?

    Common symptoms
    Doctors and EDS patients must not assume that their symptoms are always due to their EDS and are therefore unactionable. For example, even among the EDS population, the number one cause of fluctuating vision is diabetes.

    Blurred vision that comes and goes;
    difficulty in accommodation
    • Diplopia (double vision) out of one eye, or with both eyes open
    • A change in depth perception, especially when looking to the side that may be intermittent
    • “Photophobia” (light sensitivity) • Complete, or almost complete, loss of vision in one eye that lasts a few minutes; migraine auras, scintillating scotomas
    • Visual “snow”
    • Dry eyes
    • Tunnel vision
    •Floaters (EDS patients have more floaters than the general population)
    • Flashes of light or a curtain over the vision •
    *Vision that is not fully correctable with glasses or soft contact lenses. (Doctors should perform corneal topography on all patients with unexplained blurred vision.)
    • Myopia (nearsightedness) that increases quickly •
    • Deep eye pain that seems to have no ocular cause (it may be due to venous pressure on the branches of the trigeminal nerve -- the fifth cranial nerve in the cavernous sinus – and can thus exhibit intermittently).

    Comorbidities

    High Myopia
    Nearsightedness
    In Ehlers Danlos Syndrome, however, the corneas are often found to be fairly flat, meaning that the near-sightedness is due primarily to elongation of the eye.6
    Keratoconus
    Early symptoms of keratoconus include vision that just doesn’t seem as clear to the patient as it should be – even with use of new glasses or soft contact lenses. It is usually worse in one eye than the other.
    Diagnosis of
    Lens Subluxation
    Angiod Streaks
    Dry Eyes
    Strabismus
    Macular Degeneration
    Posterior Staphyloma
    Carotid-Cavernous Sinus Fistulas

    Post

    How in the world do I work?

    Hi, I have Hypermobile Ehlers Danlos Syndrome and some of the health problems it has caused is photophobia, severe eye strain, and numerous hand problems and pain. I was unfortunately disabled before I could work, and in USA, that means I only can get Supplemental Security Income (SSI), instead of the Social Security Disability Income (SSDI).

    SSI is a needs based program and only pays out the maximum of $736/month if you are homeless or paying an "equal share" of rent, otherwise the maximum you get is $514. I am getting $514 because I am at my mother's and even $736 is barely enough to rent a room where I am (Washington State).

    SSDI requires work credits to get on (1 credit = $1,410 of net income and only 2 credits can be earned in a year) and I have found that I have to work at least five years before I qualify.

    I have no idea how to do this with my vast collection of symptoms from my illnesses. Menial labor is out, due to joint problems and fatigue. Computer work is very difficult with my eye and hand problems. Because of the unpredictability of my illness, I would not be able to adhere to any kind of work schedule another person sets for me. The photophobia prevents me from working under fluorescent lighting. I then determined I would be limited to a multifaceted home business that would allow me to rotate activities to compensate for the limited time I am able to do anything before I am in too much pain.

    Furthermore, my living situation is bad and my mother is a hoarder--i do not even have my own room and what space I have is pretty much full. I'm on housing lists, but the waits are years long, up to a decade. If I move to a place where you can live on $514 with a systems wide, incurable illness that many doctors do not understand, I will lose the network of doctors I have created over many years. Most places with that affordability also have a climate my body will fail in and do not have good healthcare. I am very stuck.

    What do those of you with photophobia and/or EDS do for work?
    #Photophobia #EhlersDanlosSyndrome

    Post

    head shaken up

    #concussions . it brought on a sensory disorder and #Photophobia. special tinted glasses from here on out! :)