Dry eye - sensitive to sunlight

[Susan Mc Govern]

Hi,

I am 42 and my dry eye began about 5 years ago after I had my last child. After reading some of these postings I am still not sure what has caused my dry eye. However, I have been in severe pain with them for a long time and on Restasis for almost 2 years now.

By far my biggest problem is sunlight. When the weather gets good my quality of life goes down. By 6 pm each night my eyes sting and hurt. This is after wearing special sunglasses and a hat. If sun light gets in at all my eyes kill. In the morning then when I wake up my eyes are red and sore looking and it takes a long time to perk them up.

I do too often wonder what things are going to be like down the road. As this condition does make me very cranky and self concious. The first thing I notice about people now are their eyes.

If anyone has any further advice please let me know. I want to enjoy the summer but know that by early evening I will be in pain!

Susan

[kitty]

The light sensitivity can be caused by corneal edema, the result of inflammation. What are the special sunglasses that you have been wearing? Have you looked at Panoptx or Wiley? These glasses help keep the air out, moisture in. Click on the link at the top of the page for the Dry Eye Shop, then click on the eye wear link. You might also try helping your eyes out by running a humidifier in your home/office, and avoiding use of the heat and AC and fan in your car. Lastly, you might consider wearing Tranquil eyes at night.

[Susan Mc Govern]

thanks kitty

Hi Kitty,

Thanks for replying. I do have Panoptx sunglasses. Is there anything that can be done for the corneal edema? Where do I get Tranquil eyes?

Thanks,

Susan

[kitty]

If the Restasis is helping you, it should be reducing the inflammation and thereby reducing the corneal edema. I noticed when I was on it, the only real improvement I saw was in my light sensitivity. It sounds like at least part of your DES might not be inflammatory in nature. Lotemax/steroid drops might work wonders on decreasing the corneal edema as well, if that is the cause of your light sensitivity. Have you been screened for early cataracts and other eye problems not DES related?. You can buy the Tranquil Eyes from the Dry Eye Shop, click the tear drop at the very top of the page.

[stella]

where to get tranquileyes

Hi Susan
Sorry to hear about your problems with light- sensitivity
I am from Northern Ireland and recently got tranquieyes from "Magellans travel supplies"
E-Mail customerservice@magellans.co.uk
They describe themselves as "America's leading source of travel supplies"
If you want them quickly u can pay extra for express- postage and they come in a few days
They do not sell the whole range of tranquileyes - just the travel version (which i use at night ) It includes the goggles + inserts of foam that u wet and little gel pads that are ingeniously activated to provide heat for up to an hour inside the goggles .They are helpful if u are very dry at night which i am
You say u have the panoptx goggles -
I wear variafocal glasses and have to wear sun glasses over my glasses(I am not prepared as yet to pay for perscription reactolites as i only bought new expensive glasses recently)
Anyway i dont have as bad a problem as you with sunlight
I do have to wear sunglasses to use the computer and watch TV
Have you come across a good ophthalmologist in Ireland ?
There is mention of a Dr Stephen Carrington as being based in Ireland ,listed as a member of the Tear film and Ocular Surface Society
I dont know any more about him and as yet have not tried to find out - but that might be a good lead into someone near who could help - and most important - had an INTEREST in our problems as i am sure u have found out that most eye docs are not interested, if your condition is not sight- threatening DE seems to be the cinderella of the eye problems and we are constantly told it is'nt serious and try to forget about it !!!
Anyway dont give up
There is help out there and with Rebecca's wonderful website and chat rooms -you are not alone
Cheers
Stella

[Susan Mc Govern]

hi Stella

Hi Stella,

Thanks so much for replying. This is great to be communicating with people who actually understand my problem. The first time I went to the eye doctor here in Ireland they did send me away when they found out it wasn't vision that was my problem. While I am extremely thankful that I have excellent vision, the dry eye has affected my life greatly in the last few years. I saw an eye specialist in the states two years ago when I was home and he prescribed the Restasis. Things have improved since taking the Restasis but unfortunately the problem is still there. In particular to sun light, over exposure to the computer (which is my job) and yes, also the lighting in shops.

Thanks for the info on Tranquieyes, I will try Magellans. As you are probably aware yourself, finding things in Ireland is very difficult. I am from Boston originally so my mother sends me the Restasis from there as I couldn't get it here.

Currently this is what I take: Restasis, Systane drops during the day, Udo's Oil, Bilberry Capsules and tear gel for night time. I think all this helps in maintaing as best as possible, it can get very expensive!! It takes me an hour in the morning to get my eyes actually open.

I have not found a good opthamologist in Ireland so I am definitely going to look up Dr. Stephen Carrington to see if he can help. Thank you for letting me know about him.

Great to hear from you Stella. Can you tell me a bit more about these prescription reactolites?

Thanks,

Susan

[Susan Mc Govern]

hi kitty

Hi Kitty,

What was your experience on Restasis? Nothing seems to be helping my light sensitivity!!

Is there any danger in these steroid drops? My GP was highly opposed to this when I asked him a while back?

[stella]

Perscription reactolites

Hi Susan
Hope u are having a better day!
Reactolite perscription glasses as i understand - are your normal perscription lenses (If u wear glasses that is)done in special glass/or is it perspex they use now ,anyway done with a material that is plain" glass" and then as the light inceases and sunshine increases, the lenses go darker to protect the eyes.
I have a cousin who swears by them -He has to have variafocal lenses and says he paid £300 for them -hense my reluctance to buy them at the moment However i dont have the intense photophobea (intolerence to light )that u seem to have (I do have plenty of other issues )
I think you should find a good recommended optician and talk to him/her about your light sensitivity and suggest reactolites(Some of them can be hard- sell so beware!)
I go to Alexander Murray and Bain here in the North ,and have found them very good.I like Mr Murray
He diagnosed my MGD - demonstrating it by staining the eyes and photographing them and then blowing up the photos so large i could see the blocked glands !! Incredible technology He was also able to give me very accurate info on the back of my eyes which thank God are very healthy
Anyway all the best and let me know how u get on
I would be VERY interested if u managed to find Dr Stephen Carrington
Stella

[stella]

Steroids

I have just returned from my GP to ask for Doycycline which she did give me
Also to ask her opinion on steroidswhich an ophthalmologist ordered for me because at that time my eyes were hypersensitive (they have settled down a lot thank God)
I tried twice to use them and could'nt because they contained BAC (the dreaded preservative)
I'm glad i could'nt use them - side effects of long- term steroids in the eyes are glaucoma and cataracts - both serious complaints
However i looked up the internet and found the equivelent in PF steroid drops
That took me to my GP this am to see if she would perscribe those PF ones
No way was her response - she did not care that an eye specialist had already ordered them for me She was addament like your GP
Her arguments were
1 not a long -term option therefore only tempoary relief
2 Too many serious side effects
Basically she told me to continue to find safer treatments
Stella

[Rebecca Petris]

He diagnosed my MGD - demonstrating it by staining the eyes and photographing them and then blowing up the photos so large i could see the blocked glands !!

That is excellent. I admire a doctor who will do things like this for their patients.

[Susan Mc Govern]

restasis?

Hi Rebecca,

This web site is great! It is so good to be corresponding with people who understand the dry eye problem. I do feel so alone a lot of the time with this condition!

I am just curious what your feedback is about Restasis? I am on it for almost 2 years now. It most definitely helped in the beginning but I have found lately that it does burn when I put it in. I am not sure if it is still doing any good.

I look forward to hearing what you know.

Thanks,

Susan

[Susan Mc Govern]

Dr. Carrington

Hi Stella,

Thanks for all of your help.

I finally found some information on Dr. S. Carrington but unfortunately he specializes in veterinary medicine and is not available. However, someone on the committee is going to get back to me with another referral. I haven't heard back yet.

Could you send me the information on your opthamologist if you don't mind. Phone number, etc?

Also, Magellan's doesn't supply to the Republic of Ireland. I think because I am going to Boston this summer I will order some from the Dry Eye Shop and have them sent to my mothers house there so that they will be there when I arrive.

Thanks for all your help,

Susan

[kitty]

Hi Kitty,

What was your experience on Restasis? Nothing seems to be helping my light sensitivity!!

Is there any danger in these steroid drops? My GP was highly opposed to this when I asked him a while back?

I tried Restasis twice. I was hypersensitive/allergic to it and could not tolerate the side effects so I stopped using it. The only benefit I saw was a reduction in light sensitivity after using it for about two weeks.

[stella]

Hi Susan
Pity Steven Carrington is a vet ! Animals must suffer dry eyes !!!!
I really could not recommend a good ophthalmologist - I saw one who I went to privately in Belfast He was OK and very nice and diagnosed me as having blepharitis ( he did not say it was posterier bleph ie MGD)
I knew that already since my optician had photogaphed the blocked glands ,blown up the photos and shown me
He also said I had dry patches all over my eyes and that caused the hypersensitivity and he ordered steroid drops to be taken for two weeks but i could not take them because they contained preservative He also indicated there was a stress factor in DE and verified a few questions I had
So it was not a very useful visit for £100
Besides I think his particular interest is glaucoma(I purposely dont mention his name as I am not recommending him)
The important thing is to find an ophthalmologist with a particular interest in ocular surface - That is not easy in N Ireland and I really dont know anything about Eire
We are under the British National Health Service here in the north and whereas care is free - It is very good for emmergencies and acute medecine and even routine stuff once you get into the system It is hopeless for chronic ailments
First you have to go on waiting lists- 6 months to 2 years in some cases here- just to see a specialist -then you never see the same person twice IF you do get a follow- up you very rarely see the consultant himself - just his underlings many who come from different countries and often dont speak good English Dont get me started By the way just for the USA viewers it is'nt actually free We all pay an insurance stamp all our working lives - That is how it is funded
The bottom line is it is hard for us DE sufferers to get the kind of care you get in the USA
Sorry i cant be more helpful Susan
Have you sent for DR Latkany's book?- It is better than any Ophthalmologist
I do realize that you need on ophthalmologist to address your light - sensitivity problem (even if it is only to rule out other causes of light - sensitivity then your DE)
Hope you find a good one
Stella

[dianat]

There are plenty of us in the US who feel extremely lucky to have our healthcare system! It's not perfect, but it's better than anywhere else. I am so sorry to know it's so difficult in GB to get good attention. I knew it was less efficient than here, but what you describe is a nightmare.