Extreme photophobia & looking for answers?

[Boroboy]

Have not posted for a couple of years now, still looking for answers.

I suffered from my first ever ititis flare, around 4.5 years ago now. I immediately became photophobic within my effected eye (right). After 6 months on pred drops, I was told that the inflammation within my affected right eye had cleared.
From that time on, I still suffer from extreme photophobia within my right eye. Wearing wrap around cat 4 sunglasses, indoors & out Over the 4.5 year period, I have seen 4 different Ophthalmologists & two professors, inc a prof A (London). None have any answers.
I’m also a long term suffer from dry eyes & have all 4 of my tear ducts plugged. Using additive free artificial tear eye drops on a frequent basis. May also be a suffer from SJ.
As far as I can gather there's no inflammation present within my problematic eye, some pigment left from my initial iritis flare within my inner lens.
Is it possible that the pigment left within my inner lens could be the cause of my photophobia? Struggling to find a supportive eye specialist within the U.K now. My latest meeting with a Ophthalmologist didn't go down well. Suggested cause. Could be psychological
I am also a long term diagnosed suffer from Ankylosing Spondylitis.
Any suggestions would be really appreciated. Inc Mike’s
Thanks.

[Mike Bartolatz]

the only things I can think of is some inflammation of your cornea causing the problem or optic neuritis. with your severe dry eyes it could very well be caused by cornea problems. but I am not a doctor. are you using a gel type lubricating eyedrop at night and preservative free eye drops duing the day?

I wish I could be of more help. Professor A in London is the top specialist.

FYI, my photophobia took years to go away too. I still have some problems and my intermediate uveitis has been quiet for over 5 years now. I also have severe dry eyes so I chalk it up to the cornea stuff. I have punctal plugs and still use eyedrops.

wish you the best,
Mike

[Boroboy]

Mike,
Thanks for you reply.
Yes I use eye drops (Hyabak), they're additive free. I also have had all my tear ducts plugged, after time they came out. Fortunately the tear canals have now blocked themselves. Surface of my eyes have been checked & seem to be OK. I use the eye drops around 4 times an hour on average.
I went to see A around 1 year after my iritis flare, he said there does not seem to be any inflammation present & the photophobia may be related to my dry eyes. Since then, I have had all my ducts plugged, eye's don't seem as dry now. No inflammation present, but photophobia still there. Recently been to Newcastle to see another eye prof, he had no idea to why I'm still suffering from photophobia.
All that I can say for certain is that there is pigment left from my initial iritis, was thinking this may be the cause of my light sensitivity. Altering the way light enters my eye. Other than that, I have no idea.
Did you suffer from photophobia when there was no inflammation present? Did you also have to wear sunglasses indoors & out?
Hope you don’t mind myself asking?
Thanks.

[Mike Bartolatz]

I still have photophobia even after quiet eyes for over 7 years now. not as painful as when there was active inflammation.
some days I do use my brown tinted sunglasses while on the computer. I use yellow tinted driving glasses when it is foggy and I also use them at night to block bright light from oncoming car headlights.
I have dark green and gray fit over sunglasses for outside on bright days and I use the brown ones on overcast days.
glare from the computer screen leads to headache.

I still have problems of photophobia when they dilate my eyes for six month check ups too. not as bad as before however.

when was the last time they did a Fluorescein angiogram of Optical Coherence Tomography test to look for subtle changes of blood vessels and to look for cystoid macular edema caused by inflammation? CME can also cause photophobia to occur if I recall correctly.


wish you the best,
Mike

[Boroboy]

Mike,
That's interesting to know, that you still can suffer from photophobia, even when active inflammation not present. After an iritis flare. Not that I want you too. None of my previous specialists have took the time to explain that to me or even to tell me that this was a possibility. As I'm now 4.5 year on from my first flare. I was also a little late having my iritis diagnosed & treated. As I was given the wrong initial advice, stating that I don't have iritis & it will clear up in a few days after rest. Which it didn't, ended up at eye A&E. I first visited an optician for a private eye examination/consultation. My first big mistake, should have headed to eye A&E first. At that time I was not aware of iritis or it's affects. Would never make that mistake again. The initial misdiagnoses probably cost me an extra 3-4 days before receiving the correct treatment.

I use yellow tinted glasses to drive at night, when I have too. Keep night driving to a minimum, due to head light glare pain. Can't always avoid night driving though, due to work. Other than night driving, always wearing cat 4's for indoor & out use. Cat 3's for day driving, as that's what U.K law stipulates.

I’m trying to come to terms with the vanity side of things in relation to wearing cat 4 sunglasses indoors, for work meetings, meeting new people for the first time etc. Find it hard at times explaining to people why I need to wear them. I’m slowly getting my head around it. Have to wear them to be able to function as a human being. I work part time now, due to my eye condition & my Ankylosing Spondylitis. Need the social integration. Also very lucky to have a very supportive family behind me.

Regarding the tests you have talked about. I have no idea, as my eye specialists have never really explained what tests they have ran & what they're for. As a nurse tends to run some of the tests first prior to seeing a consultant. Apart from a quick look into my eyes to explain to me that there's no inflammation present. Check the surface of my eye, run paper test. To tell me that my eyes are quite dry, which I already know.

I have been thinking about having my inner lens replaced, but that would be something I'd have to fund myself, as none of my previous specialists have thought that this would be a good idea. May make my situation worse. Basically they have no idea how to treat me or how improve my situation. I have lived with this condition now for 4.5 years. Now realise this may be for life. Now looking as though it's chronic. The last professor I went to see, explained to me that it may now be part physiological. I really appreciated his comments Not that I have been to see many professors. Just 2. Prof A (4 years ago), at Croyden, London. Latest one at Newcastle (last week). Just about over that vistit now

On a more positive note, with a bit of luck & with time my photophobia may improve, I hope so. Has seemed to have stayed at the same lever for the whole duration from onset. Summer months are worse for me. Sunglasses & cap time

Appreciate your comments.

[Mike Bartolatz]

I hope your condition improves quickly for you. I have just learned to 'live with it' and not dwell on the situation focusing on what I have to do rather than focusing on the photophobia and related stresses of that.

I was 15 when I came down with uveitis and I am an oldefart now at 63. I've been living with this for too long but life goes on............

take care,
Mike

[Boroboy]

Mike,
Your right about life goes on, think i'm just starting to come to terms with it. I was 40 when I had my first & only flare (so far).
Any future improvement, I shall post again.
I find the dark grey tink the best to live with, also use dark brown too. Have you found any other colour tinted lenses useful?
I only have the one affected eye, my right one. Find it better to use tints on both eye's to balance them up. If I get much darker, I'll be using welding goggles. Will try to avoid that route. Best option, probably cat 3 for my left & cat 4 for my right. May be worth myself investing a bit more on some custom made wrap around sunglasses.
Are your glasses the wrap around type? Do you also have to wear them indoors?
Thanks.

[Mike Bartolatz]

I wear 'fit over sunglasses', sunglasses that fit snuggly to the face over your regular glasses. they have gasket to keep wind out. they are available at most motorcycle shops or online. they make them with interchangeable lenses of various colors that you might be interested in. Many of our soldiers buy them to protect their eyes in desert conditions to keep sand and wind out.
you can get them im prescription too but they start at about 100 dollars and up.

I buy the cheap ones that cost about 20 dollars because I lose them or they get scratched up. google fit over sunglasses and you will see what I mean. (also a link in the notes above the list of topics in this forum).

I have to wear sunglasses whenever outside as I have intra ocular lenses implanted to replace my lenses which were opacified from cataract formation. my regular glasses also are photoreactive and are gray when darkened. the danged things don't change color in my cars though as my cars have tinted glass but th glass isn't dark enough to do any good.

yes I do wear the brown tinted ones indoors.

some individuals like blue or pink lenses for inside.

take care,
Mike

[Boroboy]

Mike,
At the moment I don’t need prescription lenses to see, just the extra dark tint for the light. I will probably look into buying some custom made wraparound sunglasses. Which are not cheap, neither do the cat 4's seem to be in wrap around style.
The over glasses seem a great idea, to wear over prescription glasses or even without them. I will have a look at them too.
I appreciate your advice & kind words.
Many thanks.
George.

[Mike Bartolatz]

http://www.goodglasses.com/jonathanpaulfitovers.html

[Boroboy]

http://www.goodglasses.com/jonathanpaulfitovers.html

Thanks for the further info.

In your opinion do you still think Prof A is the best guy in the U.K to see?
I did see him at Croyden around 4 years ago & he did say at the time he would be happy for me to come back.
May be worth myself giving it one more try. The other option is the Moorfields, at London. My current local Ophthalmologist may refer me to either; otherwise I may have to go for a private consultation.
Many thanks.

[Mike Bartolatz]

yes professor Ayliffe it the specialist to see in the UK. he has several hospitals that he practices out of so go to http://www.uveitis.org PATIENT information section INTERNATIONAL specialist list for contact information and email address that you can contact him through. I know he will look for a cause if he thinks it appropriate. he does see patients privately and through the NHS.

my best,
Mike

[Boroboy]

yes professor Ayliffe it the specialist to see in the UK. he has several hospitals that he practices out of so go to http://www.uveitis.org PATIENT information section INTERNATIONAL specialist list for contact information and email address that you can contact him through. I know he will look for a cause if he thinks it appropriate. he does see patients privately and through the NHS.

my best,
Mike

Cheers for link.
Have sent him an email a few days ago now, explaining current eye issues & info on the last consultaion I had with him. Will wait to see if I get a responce.
Thanks again.

[Mike Bartolatz]

Hopefully he will respond, if not give him a call and make an appointment. ask for an expedited appointment and always inform the gatekeeper that you are a patient of his not a new patient.

Good luck,\
mike

[Boroboy]

Mike,
have made an appointment to see prof ayliffe back end of May. I'm hoping he can give me some answers, unlike most I've previously seen through the NHS. Going to see him at the Lister Hospital in London. Have gone the private route.
I nearly gave up with specialists, as I've received such poor advice from most of them over the last 5 years. I'm pleased I finally have made the effort to see him again.
Thanks for the info.