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New and tired of being treated like I grew a third head. ;(

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  • New and tired of being treated like I grew a third head. ;(

    Omg how frustrating. I am alllmost retired. almost almost almost there. Started last December, light sensitivity. Then having to hold an eye open to drive, to watch tv, to use the computer, to hold a conversation. Otherwise I squint so hard I end up with headaches...and I still cant see. Then trying to keep the eyes open, wow, my head, I unconsciously do little spastic jerks trying to jerk eyes open, looks weird to others, specially at work.
    Had to stop driving, its dangerous. Then I get pain over the eye areas. Get seen and treated by 5 eye doctors, none of their remedies work. Well then, try a neurologist. That didnt work? Ok Psych ward>that way. (sigh) OK so eye doctors say its dry eye. I continue with the microwave moist heat compresses , lid scrubs, feels good and the artificial tears. Finally get referal to see Cornea specialist. She says your eyes look relatively healty. WTF??? serious? In this planet? I am having to wear very dark sunglasses plus cocoons over those, just to get from the car to inside the office. She says she's not convinvinced the photophobia is eye related. Suggests going back to neurologist. He thinks it could be a presentation of a form of migrane. She is going to treat me for Blepharitis. Going to get my blood drawn tomorrow to sent out for my serum. I'll try just about anything. I need to get back to work. Been out on disability so long I am 3 weeks away from loosing my medical benefits. *cringe*
    All right guys and gals. Open the gates. All thoughts, advice, hints accepted, none too small, please. So grateful.

  • #2
    Sorry to hear you're struggling. When they say the eye looks healthy maybe they mean the cornea looks undamaged which is definitely good. But as they identified blepharitis seems like there might be something going on. You could ask them to check the function of your meibomian glands, as dysfunction of these glands can also lead to blepharitis in some cases. The oils form the top layer of the tear film and prevent tears evaporating too quickly and allow for lubrication between eyelid and eye surface. Witrhout it you can get evaporative dry eye. They can also do a tear break up time measurement to check this. There's also schirmer test to check moisture level.

    You could consider trying moisture chamber glasses such as Ziena, 7Eye, WileyX. They have a shield built-in around the frame like the cocoon you mentioned.

    Keep up with the warm compresses. For lid cleansing consider a hypochlorous sanitizer like Avenova, Heyedrate Lid Lash, Ocusoft Hypochlor (if you're in UK / Europe Natrasan First Aid or VitalBaby Aquaint). Tea tree oil can also be helpful such as in Cliradex wipes or Eyelove soap.

    With artificial tears it's sadly trial and error so keep trying until you find that gives you comfort. I currently use Hylo-Forte, Thealoz Duo drops or gel, Retaine MGD aka Cationorm but everyone is different.

    The jerking movements certainly sound like they could put a strain on your body / head. There's a condition called blepharospasm. I wonder if physiotherapy, massage, acupuncture etc. may relieve some of the tension until you can work out something to avoid jerking.

    The serum definitely could help and it's great they're sending out for that. You could also consider scleral contact lenses as some can find it helps their light sensitivity.
    Sufferer due to Toxic Epidermal Necrolysis.
    Avatar art by corsariomarcio


    • #3
      The scleral contacts, I am assuming I need a prescription, right? That would be awsome to try, I really need the light sensitivity under control, so much is affected by it. and I need to be able to function.
      The Jerky head movements its me over compensating and trying hard to open eyes without prying them open with fingers.
      When the doctor was examining my eyes she said she checked the glands too. Not knowing what said checkup consists of I cant say for sure if she did or not.
      Thank you for all your wonderful suggestions. I will try one at a time and see what works.
      thanks again for responding.



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