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Re: Photophobia

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Photophobia is a serious problem with those of us with sarcoidosis.

Call today and get into the Ophthalmologist, explain that you have become so light sensitive that you are wearing your sunglasses inside!

The problem with this is that we get IRITIS and UVEITIS.

These two problems (and the main sign is light sensitivity) cause an ACUTE GLAUCOMA ATTACK.

The iris of the eye is controlled by the "spider-web" uveal ligaments-- and if either of these is inflammed, then they disrupt the "pumping" mechanism of your eyes, and the intra-ocular pressure goes way up, you get the severe headaches, the light sensitivity and if you don't address it as EMERGENT-- the chance of losing your vision to glaucoma is extremely high.

This was the area of medicine that I worked in for many years, and I was -at that time- a Certified Ophthalmic Assistant. This is the #1 issue that the MD's insisted we get the patient in-- immediately!

Call today and tell them what is going on! You need to be seen by someone, even if it's the "On Call" Ophthalmologist.

Don't screw around and blow this off-- I'd rather be wrong that have you post saying you've lost your vision permanently.

Sincerely,

Tracie

NS Co-owner/moderator

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>

> Photophobia is a serious problem with those of us with sarcoidosis.

> Call today and get into the Ophthalmologist, explain that you have

become so

> light sensitive that you are wearing your sunglasses inside!

> The problem with this is that we get IRITIS and UVEITIS.

> These two problems (and the main sign is light sensitivity) cause

an ACUTE

> GLAUCOMA ATTACK.

>

> The iris of the eye is controlled by the " spider-web " uveal

ligaments-- and

> if either of these is inflammed, then they disrupt the " pumping "

mechanism of

> your eyes, and the intra-ocular pressure goes way up, you get the

severe

> headaches, the light sensitivity and if you don't address it as

EMERGENT-- the

> chance of losing your vision to glaucoma is extremely high.

>

> This was the area of medicine that I worked in for many years, and

I was -at

> that time- a Certified Ophthalmic Assistant. This is the #1 issue

that the

> MD's insisted we get the patient in-- immediately!

>

> Call today and tell them what is going on! You need to be seen by

someone,

> even if it's the " On Call " Ophthalmologist.

>

> Don't screw around and blow this off-- I'd rather be wrong that

have you post

> saying you've lost your vision permanently.

>

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

Thanks for the advice Tracie and for the genuine concern. I went to

the ophthalmologist last week, the morning after I received the NS dx

from the doc. The ophthalmologist was highly recommended by family

members as he is very meticulous. When I called to schedule the

appointment, I asked the most important question...does he have

experience with sarcoid patients? The answer...he has several

patients with sarcoid and he wanted to see me ASAP. He was definitely

off on the right foot.

Once in the exam room, he immediately dimmed the lights to reduce the

strain on my eyes...props to the doc...he gets an A+ in my book for

being so considerate. 2 hours later, I left the office with a

feeling of relief...no iritis or uveitis...intra-ocular pressure was

normal. He put me on a 6 month exam schedule, made me promise to

come in immediately if there were any acute changes in my vision,

then gave me a 24 hr emergency number. I'm waiting for my eye care

insurance to kick in after 1 Jan so I'll see him again the week after

next to order my glasses...or sooner if I don't see any improvement.

Please know that I truly appreciate the advice and concern. I have

wrestled with this beast for many years despite not having put a name

to the face until recently. I've learned, mostly by trail &

error...admittedly, the school of hard knocks is not always the best

teacher, and will continue to learn how to make the most of life as

each opportunity presents itself. Be that as it may, I've come to

the realization that there is so much that I don't know. The

material on the internet is vague at best. To that end, the first

hand knowledge that each of you share is invaluable…and the genuine

concern & respect is a gift far greater than any one could ever hope

to receive. Thank you all for the gifts from the heart that you

share so willing. May each of you find peace & happiness during this

holiday season…Tony

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Tony,

I also have diplopia and chronic uveitis in one eye. I do wear sunglasses at work sometimes if my eye hurts. I don't care what I look like. I also wear compression gloves sometimes. People are rude and ask why I'm wearing them. Would someone ask a person with a cane why they use it?? Okay, enough of that. I think you might want to let your ophthamologist know how much pain you are really in. I also find that Motrin helps some with the periorbital pain. If your computer monitor bothers you, there are screens to help cut down on brightness and glare. I also use one eye to read and also drive. I fear sometimes that I will miss something, but I check three or four times at least before pulling out of a side street or backing up. Gotta work, right??

Bonnie B

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>

> Tony,

> I also have diplopia and chronic uveitis in one eye. I do wear

sunglasses

> at work sometimes if my eye hurts. I don't care what I look like. I

also wear

> compression gloves sometimes. People are rude and ask why I'm

wearing them.

> Would someone ask a person with a cane why they use it?? Okay,

enough of that. I

> think you might want to let your ophthamologist know how much pain

you are

> really in. I also find that Motrin helps some with the periorbital

pain. If your

> computer monitor bothers you, there are screens to help cut down on

brightness

> and glare. I also use one eye to read and also drive. I fear

sometimes that I

> will miss something, but I check three or four times at least

before pulling

> out of a side street or backing up. Gotta work, right??

>

>

> Bonnie B

>

Bonnie,

Thank you for the tip on Motrin. The past few days have been

rough...neither tylenol or excedrin touched the headache. But it's

back to work today so I'll dig down deep & put on a happy face.

You are so right Bonnie...I don't mind if folks are curious or

concerned...it's when they're rude that I get annoyed. I had one eye

patched for a few weeks due to complications of a flare which left my

one side of my face paralyzed. Oh, another 'pirate' comment...how

original! A good friend told me that most folks have no idea what

sarcoidosis is or how it affects one's life so I'm a little thicker

skinned these days...heck, she was right as I, too, had never even

heard the term until I was diagnosed with it.

I'm learning to ride out the pain as my nerves heal after the

numbness of a flare subsides...I'm learning to let go of the non-

sense & petty baggage in life as it means little in relation to the

big picture...I'm learning to laugh at event rather than bemoan my

circumstance as self pity is a waste of time & effort...and I'm

learning to live life to the fullest & embrace each symptom free day

as it is a gift...I almost feel bad for those who go through life

taking each day for granted...peace & happiness.

Tony

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