Photophobia

[katia]

Hello,

I don't see a lot of information on photophobia and as it is my main problem with dry eyes I would like to know if I am the only one suffering soooo much of it or if you are all experiencing the same problem.
On bright days like I have too many here in FL, this is unbearable and makes my eyes very painful. In the stores under strong lights it is very difficult too.
I have been on doxy for 33 days now and see no improvement. My DE started in Spain after 3 weeks of what was supposed to be vacacion....very dry air, AC blowing too strong in the room, dust of constuction and strong sun...

and has been going on since. It is the fourth mont now, but as it first has been badly diagnosed, Blepharatis has been since added up...
I also take Restasis that I'll stop at the end of the month because I'll return to France and I guess it is difficult to get it there but also because I dont think it brought any change to my condition. I had a schirmer test of 10/10 and one month after another one of 0/8.. under Restasis.
The doxy got raised at that time from 50mg to 100 mg. I take the 100 mg only since 10 or 15 days ago.
I do all the massages ans scrubs with ocusoft, and my drops are refresh endura and thera tears... I also have a steroid ointment to apply 15 days then stop one month I only had this for 9 days so far..
Please, tell me if you also have photophobia, or if it is now gone what stopped it?? and after how long of treatment it stopped??
My blepharatis seems to be more of staphilocoque type as I don't have the glued eyes or the crusts in the lashes
any answer will be greatly appreciated.
I also have the supplements we all talk about.. what more could I do or change??
thanks!!!!

[kitty]

I have photophobia. It is worst when my eyes are flaring. I read or was told that it is the result of inflammation of the cornea. I also see halos around lights when the photophobia is bad. When my eyes were at their worst, I worse sunglasses most of the time. Lately I have worsening photophobia again I also see starbursts in the lefty eye only, but have learned this is probably not DES related. I have ordered some night vision glasses to help cut down on the glare from headlights at night.

[katia]

Thanks Kitty for answering. It makes me feel less anxious to read that I am not the only one and to see that it seems ""normal"" associated to DE. What are the night vision glasses that you mention???
Not that I would reaaly use them, as I try not to go out at night especially, or I have someone drive me. At least in Washington state you may have less sun and UV than me in FL..
Good luck to you. I hope you'll find a cure
katia

[shoemama]

I too have suffered from photophobia. It was especially bad when I had my initial "attack" of dry eye in 2004. Photophobia was a problem for a good 4 months. I too relied on sunglasses alot. It does come and go.

[kitty]

Thanks Kitty for answering. It makes me feel less anxious to read that I am not the only one and to see that it seems ""normal"" associated to DE. What are the night vision glasses that you mention???
Not that I would reaaly use them, as I try not to go out at night especially, or I have someone drive me. At least in Washington state you may have less sun and UV than me in FL..
Good luck to you. I hope you'll find a cure
katia

I ordered the goggles from Gadget Universe Just type "night vision" in the search screen. They are not very expensive. I got the clip-ons because I could not tell if the others would fit over my glasses.

[katia]

I ordered the goggles from Gadget Universe Just type "night vision" in the search screen. They are not very expensive. I got the clip-ons because I could not tell if the others would fit over my glasses.

Thanks again. I went to the web, and this is a good idea to have them just in case .. for that price it is worth it. For home in the evening I put a lot of stainglasses everywhere, as their light is softer and there is less glare also.

[skygoddess]

Hi,
I can offer one suggestion. I also struggle indoors with fluorescent lights. If you can get some rose tinted lenses, they cut the fluorescence, and they look pretty darn cute too!

[Judy]

I struggle with photophobia as well. It is very tough to be driving in bright sunshine in FL even with my darkest shades on. If I am walking my dog, I look down alot to avoid the brightness, etc., etc. I have two different floor lamps in my office with 3-way bulbs to keep from using the fluorescent lighting. (Also have a space heater 'cause they freeze me out, plus a humidifier for my so very dry eyes...) Anyway, you are definitely not alone on this wonderful website! Take care!

[cherrybrandy]

photophobia as well.

Hi i too suffer from photophobia cant stand even normal daylight and at home curtains are always shut have taken 28 of the doxycyline so far of a four month course. I found out that it takes 30 to 60 days to get full effect of doxy. I wear sunglasses all the time would love to get rose tinted ones as mentioned by a user on this site...were do you get them...I was cheered by someone saying that photophobia comes and goes for at the moment i feel it will never go...Im also doing the hot compresses every evening and facial steaming lid scrubs etc..I am over the moon to have found this site as friends and family dont understand my constant eye pain as it doesnt show much on the outside apart from my current blinking patterns.does anyone think that excessive blinking will slow up when inflammation in eyelids is hopefully reduced with doxy..take care you are not alone in this..cb

[katia]

I struggle with photophobia as well. It is very tough to be driving in bright sunshine in FL even with my darkest shades on. If I am walking my dog, I look down alot to avoid the brightness, etc., etc. I have two different floor lamps in my office with 3-way bulbs to keep from using the fluorescent lighting. (Also have a space heater 'cause they freeze me out, plus a humidifier for my so very dry eyes...) Anyway, you are definitely not alone on this wonderful website! Take care!

Thanks Judy for your post. It is exactly the same with me. And I don't know where you are in FL but I am by the seaside and this year there is also a lot of wind. I was hoping the Doxy would work fast and make things better but.. after 34 days I start wondering if it will ever happen.
Today with the rain I really appreciated the humidity I could feel it in my eyes. I'll buy a humidifier and as I move back to Normandy next week, it should be better..
Yes it is a wonderful web..
thanks again
katia

[katia]

Hi i too suffer from photophobia cant stand even normal daylight and at home curtains are always shut have taken 28 of the doxycyline so far of a four month course. I found out that it takes 30 to 60 days to get full effect of doxy. I wear sunglasses all the time would love to get rose tinted ones as mentioned by a user on this site...were do you get them...I was cheered by someone saying that photophobia comes and goes for at the moment i feel it will never go...Im also doing the hot compresses every evening and facial steaming lid scrubs etc..I am over the moon to have found this site as friends and family dont understand my constant eye pain as it doesnt show much on the outside apart from my current blinking patterns.does anyone think that excessive blinking will slow up when inflammation in eyelids is hopefully reduced with doxy..take care you are not alone in this..cb

Hello Cherry,

Well it seems that a lot of us have the same pain and difficulties to manage it and find relief. I tried to find pink glasses today but no success... everything is more like brown grey or green.. This could be an help and I'll keep looking.
I also feel it will never go away and I am desperate as it has been 4 months alreay that I can't paint ( I am an artist painter and for me my eyes were everything!!!) Yes it is difficult for people who don't experience all this pain and handicap to understand. I think the blinking helps to hydrate the dry spots on the cornea, as it carrries some tears everywhere when we blink
but I wonder how come those dry spots never go away or if they do how come some new ones appear. It seems you are new here also as you have only been 28 days on Doxy.. (me 34 or 35). So let's hope we'll get results quite soon.
I also do the lid scrubs etc..
Take care

[laine]

photophobia

This is one of my worst problems and has been for 6 years. I wear rose tinted sunglasses (made by Bolle, not sure if they still sell them, I need another pair as my lenses are pretty scratched up) all the time when I leave the house. Fluorescent lighting causes me the most pain. Regular daylight is very bad as well. I don't think that people would recognize me out of the house if I wasn't wearing my shades as I have worn them for so long now!.
I have found that regular lashline cleaning and warm heat packs have minimized the little blisters that I used to get and they used to make me even more light sensitive.
Elaine
P.S I tried doxycycline a few years ago, was on it for over 6 months and noticed no difference in my eyes. Some people find it helps them though and I hope this is the case for you.

[katia]

This is one of my worst problems and has been for 6 years. I wear rose tinted sunglasses (made by Bolle, not sure if they still sell them, I need another pair as my lenses are pretty scratched up) all the time when I leave the house. Fluorescent lighting causes me the most pain. Regular daylight is very bad as well. I don't think that people would recognize me out of the house if I wasn't wearing my shades as I have worn them for so long now!.
I have found that regular lashline cleaning and warm heat packs have minimized the little blisters that I used to get and they used to make me even more light sensitive.
Elaine
P.S I tried doxycycline a few years ago, was on it for over 6 months and noticed no difference in my eyes. Some people find it helps them though and I hope this is the case for you.

THANKS LAINE, it is a big disapointment to read that Doxy didn't help you, and even more to see that you have remained light sensitive for so many years. Did you really have Blepharatis diagnosed??? or Rosacea?? (I don't know if I have rosacea but I'll see a dermatologist pretty sure to find out.... because Doxy is supposed to work well for those conditions. 6 months is sure a long time to find out if it works or not.. if you had blisters I supposed you had Blepharatis?? then why didn't the ophtalmo try to give you anoter antibiotic???
Katia

[Brula]

hi!
I have a question for those who have photophobia. What were the first sympthoms of your dry eye ? Did you have the "classic" sympthoms (burning itching,...), or did you have photophobia? By me it was photophobia, and because of that i went to se eye doc. and he told me than that i have dry eyes !

[katia]

hi!
I have a question for those who have photophobia. What were the first sympthoms of your dry eye ? Did you have the "classic" sympthoms (burning itching,...), or did you have photophobia? By me it was photophobia, and because of that i went to se eye doc. and he told me than that i have dry eyes !

Iy was exactly the same with me. This was the first thing and even the only thing that made me realize something was wrong with my eyes. But I was in Spain at the time, and there the sun was very very strong and the ophtalmo I saw just told me to wear strong sunglasses. Unfortunately I saw a regular doctor few days after and he told me to STAY IN THE DARK as much as I could for 7 to 10 days...the most stupid thing that could be done as when you are in the dark you tend to close the eyes and then not blink... No mention of dry eyes was made by either of dry eyes. It was only 20 to 39 days after that another ophtalmo in France this time... told me I had an ""irritation of the cornea" and I was given celluvisc 3 times a day. Then another ophtalmo in the USA this time mentionned dry eyes and started me on Restasis. It was not before the fouth ophtalmo that blepharatis was mentionned. well 3 month or more after my first complain of photophobia. Photophobia is still very strong after a little over one month of Doxycycline. I have only seldom burning, no itvching at all, and no glued eyes in the morning
Hope it helps....