New Member : Adriana

[Adriana]

Dear all,
My name is actually Mark and i'm writing on behalf of my wife Adriana. Here's what she has to say as a new member;

i'm new here and hope to find more information on a possible cure, or at least methods to make my life more comfortable. My name is Adriana 43 yrs old and we are based in Leiden, The Netherlands.
My dry eye problems started about 4 yrs ago without any apparent reason.
2 yrs ago conditions were so bad i had to quit my job. I can no longe look at PC screens, drive a car or bicycle. I stay indoors most of the time with curtains drawn.

My symptoms:
stinging/stabbing pain in the eye-globes, sandy/grit feeling on eye surfaces.
I am diagnosed with light condition of blefaritis and belfarospasme. I also have dry eyes, though specialist cannot immediately see it in my tear film.

Specialists i have consulted:
i have been consulting mainly ophtalmologists (>10) at general and specialised eye hospitals in the Netherlands but also in Spain (Barraquer - Barcelona) en in Bucherest-Romania. But i did much more: i also consulted many other specialists including: dermatologists, neurologists, endocrinologists, internists. Brain scans, X-ray, EMR, bloodtests, allergytests, anything you may imagine. Result = 0 to this date.

Artificial tears and gel which help me:
- "Duratears Free" by Alcon (general use)
- "Liposic" gel by Dr Gerhard Mann (when i have an occasional pain crisis) This is greasy and temp blurrs vision
- "Cil-Clar" by Novartis; eye wash in the morning to clean eye lids & lashes

Artificial tears that were not good for me:
- i have an allergic reaction to any make of eye drop containing "thiamersal"
- Systane is very irritating to my eyes

What makes my condition worse:
(1) bright and pointed light sources. Concentrating and focussing at fixed distances. I.e: talking to and looking at someone for more than 5 minutes in an ordeal. Same goes for a pc mointor at close range.
(2) other stimuli like my children arguing and shouting, my husband's stereo - regardless of the beautiful music he plays.

What decreases my pain so i can cope:
(1) sitting at a table, looking downwards and doing things with my hands. E.g: working with clay to create ceramic objects, handling textiles to sew something together, making neclaces from beads, etc.
(2) sit on a charir look into my lap and chewing some bread, my eye pain instantly becomes less.
(3) ly down on the couch, covering my eyes with my hands
(4) keep the curtains drawn and use soft indirect light in the room. A light on the cieling even 20 feet away is annoying even if i look sideways. Yet i can tolerate halogen lights which shine upwards making the ceiling an indirect and diffuse lightsource having a large surface.
(5) silence in the room
(6) Ski sunglasses outside only reduce the amount of light so i can resist longer. Because the proporties of lightsousrces outside do not change they remain an irritant. Leveing the house whin it is full overcast is best for me. Travelling with my husband in a car at night is a nightmare; yes it's dark but the lights from the oncoming traffic are sharp and pointed, contrasting harshly with the dark.

What i have to find out - who can help?
(1) Is Duratears Free an aquos/hydrating type of artificial tear or is it a lipid/lubricating type?
(2) I would like to try other eye drops: Dwelle / Dakrina / Nutratears, where can i get it in Netherlands or in Europe?

kind regards, Adriana

[neil0502]

Mark,

As I mentioned in my PM, I visited Leiden this August. Lunch at "Annie's Birthday" was delicious!

Adriana clearly has a painful and difficult case that has hugely disabled her. I understand only too well. I think others will understand well, also. I'm glad you found us (and Rebecca's site).

My first recommendation would be that you/she consider being evaluated for Scleral Contact Lenses. I can provide a reference to a French doctor who fits them. I know there are British and German Dry Eye Zone members who can probably give you other references to other doctors. I will be fitted with scleral lenses in January, so I don't have a lot of personal expertise. In some cases, though, they clearly seem to have given people their lives back!

I'm sure others will contribute more specific information about the drops that you referenced. I don't know much about those.

I wish Adriana (and you) all the best of luck. Most of us don't really think in terms of cure right now, but we look for the best physical, medical, and psychological ways to treat, manage, and cope with this condition.

Neil

[Rebecca Petris]

I just want to second Neil's recommendation. I know of a few other people with extreme photophobia like Adriana's who had their lives changed by sclerals.

[Rebecca Petris]

Another suggestion for photophobia/blepharospasm

Mark,

I consulted a doctor I know about this, who gave me the following useful medical reference. Emphasis mine.

Ophthalmology. 2005 Dec;112(12):2208-11.

Modulation of sensory photophobia in essential blepharospasm with chromatic lenses.Herz NL, Yen MT.

Cullen Eye Institute, Department of Ophthalmology, Baylor College of Medicine, Houston, Texas 77030, USA.

PURPOSE: To determine the effect of photochromatic modulation with tinted lenses on the sensory symptoms of photophobia in blepharospasm patients.

DESIGN: Nonrandomized case-control study.

PARTICIPANTS: Thirty-four subjects (24 benign essential blepharospasm patients and 10 normal controls).

METHODS: Subjects were seated in front of a calibrated light source. Beginning at 0%, the intensity of the light source was increased gradually until the patient reported symptomatic photophobia. The intensity of the light source was then measured with a light meter. This procedure was performed first with no chromatic lens and then with 7 different chromatic lenses, each blocking specific wavelengths of the visible spectrum. The subject was then asked which lens provided the greatest symptomatic improvement of photophobia. Statistical significance was calculated with analysis of variance and t test analysis.

MAIN OUTCOME MEASURES: Objective measurement of light intensity tolerated and subjective assessment of photophobia were obtained for each chromatic lens tested.

RESULTS: The light intensity tolerated by the normal subjects compared with the blepharospasm group was not statistically significant with no lens, but grew to 3.5 times that tolerated by the blepharospasm group as more of the higher wavelengths of the visible spectrum were blocked (P = 0.048). Lenses 4, 5, 6, and 7 allowed blepharospasm patients to tolerate a significantly higher intensity of light when compared with no lens (P = 0.04, P = 0.007, P = 0.03, and P = 0.01, respectively). Although the highest intensity of light tolerated was measured with lens 6, 71% of blepharospasm patients reported the greatest relief of photophobia with lens 7.

CONCLUSIONS: Blepharospasm patients tolerate a lower intensity of light when compared with normal subjects; this differential in light tolerance becomes significantly more pronounced as the higher wavelengths of the visible spectrum are blocked. The symptoms of photophobia in blepharospasm patients can be reduced significantly with photochromatic modulation. Despite lens 6 allowing the patients to tolerate a higher intensity of light, the majority of patients preferred lens 7 for symptomatic relief of photophobia. These findings suggest that sensory photophobia may be related more to the wavelength than to the intensity of the light exposure.
PMID: 16242188 [PubMed - indexed for MEDLINE]

I don't have access to the full article but apparently the preferred lens had FL41 tint. I'm not sure if that's an internationally recognized designation and don't want to send you on a wild goose chase but this might possibly be something worth asking about anyway.

[Alexandra]

Hi Adriana

I still have two packs of Dwelle Night. I havent used them because they don't work for me. So I could send them to you if you would like to try them.

Just send me your adress as a private message and I will send them as fast as possible.

Take care! Alexandra

[Alexandra]

for sclerals in england visit www.sclerals.com

[neil0502]

Along the lines of Rebecca's post, the lenses in both my distance and near (reading) glasses are Corning Glare Control:

http://www.visionadvantage.net/corningmedicaloptics.htm

[katia]

my photophobia seems to be getting worse, and as no doctor has solutions I stopped today in a store for glasses. Surprisingly the sales person seemed to know that some glasses exist that can help. When I asked him about pink glasses for photophobia, he told me about SERENGETTI , but I haven't found too much so far. Does anyone have information???
I I also remembered having seen something on our favorite web, and here I am . Things that are worth trying I think, but those posts are old now.. is there anything new?????

[neil0502]

Katia-

What have you tried?

What helped?

What didn't?

Did you try the Corning Glare Control lenses?

Did you try the Serengeti lenses?

Did you try pink lenses?

Is there a reason you need something new? Have all of the old things failed?

Has the doctor given you any reason that your photophobia is getting worse? Has he/she been measuring your Schirmer's, TBUT, staining, etc?

Best,
Neil

[katia]

Katia-

What have you tried?

What helped?

What didn't?

Did you try the Corning Glare Control lenses?

not yet, I am only now trying to follow those options as until now I was hoping Doxy would solve the problemsDid you try the Serengeti lenses?

same with tose, that seem to be easier to find in France.
Did you try pink lenses?

yes, I tried them in a store but I was not impressed. This is why I hope the other kind will be better

Is there a reason you need something new? Have all of the old things failed?

For now yes everything I tried failed.Has the doctor given you any reason that your photophobia is getting worse? Has he/she been measuring your Schirmer's, TBUT, staining, etc?

The ophtalmo I saw on feb 5th barely listened to what I was saying and didn't do any test, even so I mentionned schirmer's... a loss of time and money.... but I have an appointment to see a cornea specialist on the 15th at the Rotchild foundation in Paris, so I hope to have more clues and have more tests done... I read somewhere that in fact the nerves that bring the info to the brain play an important part on photophobia. Not everyone with the same exact dryness of eyes has photophobia, or not with the same levels, so maybe there is a link to follow here but where to start??? I have seen so many disappointing doctors those last months!!!!!
Here in France it seems nobody has more to say than " yes you have dry eyes... so wear glasses and put drops""

thanks for you post and your concern!!! I am sorry I thought I could intercalate by changing the color of my answers but it doesn't seem to work too well this way..

Best,
Neil

thanks for you post and your concern!!! I am sorry I thought I could intercalate by changing the color of my answers but it doesn't seem to work too well this way..