Fluorescent light problems

[AngieUK]

Hi, I am on my 4th flare up since September 28th 2012, still off work. I am virtually blind in my right eye from congenital cataract, I have uveitis in my left eye. I've had the condition before from 1998 - 2002 when use of Atropine caused pupil muscle damage and the eye has previously been very sensitive to light. I wore reactive glasses that darken in sunlight. The recent flare ups have been treated with Pred Forte, I then developed secondary glaucoma - open angle. I am still being treated for glaucoma, having a 4th flare up of uveitis so back on the Pred Forte 4 times per day (reducing weekly), I wear dark prescription sun glasses when outside, shopping, driving etc., although not driving at the present time. The use of Atropine in September - November has caused permanent pupil muscle damage, it is fully dilated now and drugs to constrict it did not work at all. The hospital say it will never react to light again. I am wanting to return to work but I have found fluorescent lights to aggravate the condition and cause flare ups. I have searched for medical evidence to support my personal findings to no avail. I have tried different types of frames at my optician's but all let in the light. I have an underlying condition that causes vertigo (labrynthitis) and the light issues cause me to have very poor balance and severe nausea. Since the recent damage to my pupil I am virtually unable to walk where there is fluorescent lights even when wearing dark prescription sun glasses. I have recently bought myself a walking from to assist my mobility. Is there any medical evidence or research to support my application for reasonable adjustments to enable me to return to work? I would be grateful for any suggestions

Angie

[Mike Bartolatz]

England

William Ayliffe, FRCS, PhD
For appointments, contact Hospital of Choice directly below or
Email: profayliffe@yahoo.com
Tel: 447557102971

Hospitals
1. Lister Hospital
Chelsea Bridge Road
London SW1V 8RH
Tel: 442077307733

2. Shirley Oaks Hospital
Poppy Lane
Croydon CR9 8AB
Tel: 442086552255

3. St Anthony’s Hospital
London Road Sutton SM3 9DW
Tel: 442083354678




Andrew Dick, M.D.
Head of Division of Ophthalmology
University of Bristol
Bristol Eye Hospital
Lower Maudlin Street
Bristol BS1 2LX
UNITED KINGDOM
Tel: 0117-928-4949 FAX: 0117-925-1421
E-mail: a.dick@bristol.ac.uk

William J. Dinning, FRCS, MRCP
9 Lascelles House
Harewood Avenue
London NW1 6NS
Tel: 44-71-724-6388

John V. Forrester, M.D.
University of Aberdeen, Medical School
Department of Ophthalmology
Foresterhill, Polwarth Building
Aberdeen AB25 2ZD
UNITED KINGDOM
Tel: 44 122 4681818 FAX: 44-122 4685158
Email: j.forrester@abdn.ac.uk

Elizabeth M. Graham M.D.
St. Thomas Hospital
Medical Eye Unit
Lambeth Palace Road
London SE1 7EH
UNITED KINGDOM
Tel: 44-1719 289292 FAX: 44-1719228165
Email: elizabethgraham@gstt_8thames.nhs.uk

Susan Lightman, PhD, FRCP, FRCOphth, FMedSci
Department of Clinical Ophthalmology
Institute of Ophthalmology/Moorfields Eye Hospital
City Road
London EC1V 2PD
Tel: 44-20-7566-2266 Fax: 44-20-7251-9350
Email: s.mayhew@ucl.ac.uk

Philip I. Murray, M.D.
Academic Unit Ophthalmology
Birmingham & Midland Eye Centre Division of Immunity and Infection
City Hospital NHS Trust
Dudley Road
Birmingham B18-7QU
UNITED KINGDOM
Tel: 44-121-5076851 FAX: 44-121-5076853
Email: p.i.murray@bham.ac.uk

Panagiota Stavrou, FRCS
Birmingham and Midland Eye Ctr
City Hospital NHS Trust
Dudley Road
Birmingham, England B18 7QH
Tel: 44-121-507-6851 Fax: 44-121-507-6853

[Mike Bartolatz]

Suggest you contact Professor William Ayliffe and do whatever it takes to see him even if you must pay out of pocket for the exam.
you must have a corticsteroid sparing approach to treatment implemented immediately to prevent further errosion of vision in your only remaining eye. the exact cause of the iritis also needs to be established as you have a lot of damage from either the drugs or the underlying cause such as a pathogen like herpes sx virus or possibly Lyme disease etc. it is very unusual for your iris to not work because of dilating drops. it is often caused by herpes sx and rarely by other pathogens.
glaucoma has to be prevented by not using steroids to treat this. DMARD drugs and other classes of drugs are available to get you off all steroids and to remission. with the constant photophobia present it might also imply that there is optic nerve involvement, optic neuritis for example. you mentioned headach and loss of speech problems and this would imply a neurological cause so CNS involement may be present. a virus that caused your inner ear problem might still be active causing problems with CNS stuff too.

as to coping with photophobia, go to a Motorcycle shop and buy some wrap around sunglasses or goggles. you can buy ones with interchangeable lenses too so you can use different colors for differently lighting situations. usually under 65 dollars US. if you wear glasses to see, they make ones that will fit over your regular glasses too.
I use brown tinted fit over sunglasses that fit snuggly to my face for about 20 dollars US. you can buy them on the internet.
I use dark Green ones on sunny days and brown ones on overcast days. I also use yellow tinted driving glasses at night to cut the glare from oncoming cars. the yellow ones are also great for when there is fog present.
I also wear a baseball cap on sunny days. Polarized lenses are also a must in coping with glare off of water and snow.

oliviasvision.org is an UK websites that has members who can help you get the care you deserve. several of the Ocular Immunologists on the list above are members of the board for the site developed by a monther of a girl with Uveitis. the site fills a much needed void in the UK and Europe for online support. Professor Ayliffe is the top ocular immunologist in Europe in my Lay opinion.
please make the call to him TODAY. you have to get off the steroids and treat this systemically before you lose additonal vision to whatever is causing your eye stuff and hopefully your CNS symptoms will also improve for you.

Wishing you the very best,
mike

[Boroboy]

Angie,
Sorry to hear that your struggling with light at the moment.
I have suffered from photophobia within my right eye now for around 5 years, since an irirtis flare. I find wearing cat 4 wraparound sunglasses both indoors & out helps me get through the day I too work, part time now. I have had no adjustments made at work, just avoid working nights, as driving is difficult.
I have also just made an appointment to see prof Ayliffe, at the Lister hospital at London. Will be a return train journey for me from the North East. From research I've gathered inc this forum & Mike, he's probably one of the best specialists to see within the U.K. I have had no luck going the usual NHS route. Going to see him privately.
Hope things improve for yourself soon.

[Boroboy]

Angie,
I have paid alot of cash for cat 4 wrap around glasses in the past. Now using cat 4 safety glasses, look the same & provide the same light protection, just alot cheaper than designer ones

[Mike Bartolatz]

http://www.uveitis.org/patients/educati ... ent-guides

although this booklet was designed for getting care for students, much of the information applies to everyone with photophobia etc
I suggest that your print it out and provide it to your employer and anyone else that needs to be educated about providing accommodations in the workplace. one of the problems with fluorescent lighting is that the bulb fires at a rate that isn't good for the eye and the eye can tire easily.
usually employers will allow incandescent lighting in the immediate workplace environment when one has photophobia.

I am glad that you are finally going to see Professor Ayliffe. let me know if your problem might be linked to the herpes family of viruses that cause a non functioning iritis and glaucoma.

wish you the best,
Mike

[Boroboy]

Mike,
Thanks for the information, I will let you know how I get on.
If the herpes virus was present within my effected eye, would the prednisolone treatment not have helped? Think Aciclovir eye drops may normally be used, which I have not had.
Cheers.

[Mike Bartolatz]

no, steroids would make the infection worse. acyclovir is taken for a very long time with a single drop of steroid daily. to put the virus into hibernation.

mike

[Boroboy]

no, steroids would make the infection worse. acyclovir is taken for a very long time with a single drop of steroid daily. to put the virus into hibernation.

mike

Mike,
Thanks again for info, I will mention it to A when I see him next.

[AngieUK]

Hi,

On my 5th episode of uveitis now since September 2012, had 32 weeks of work but due back next week. I have been allowed reasonable adjustments to do all office work at home, meetings to be undertaken within 2 hours if fluorscent light present, phased return to work over 6 weeks. My pupil is wide open all the time, I bought some yellow wrap around night driving fit over glasses that help but only for a short time - hence the two hour meeting agreement! Being mostly blind in my other eye doesn't help, that pupil was cut at the top to let more light in after cateract surgery as a baby - it closes in the light most of the time. I can't wear the yellow glasses to use a computer, the colour makes me feel sick hence allowing me to work from home - I can manage in normal glasses and natural light. My employer would not change the lighting in the building, or find me an alternative work base but I really don't mind working from home - I've been home for the past 8 months!

Thank you for the information Mike and Boroboy, I did email Dr Ayliff a couple of months ago but did not receive a response. I did ask at the eye clinic if they thought my uveitis was caused by herpes but they said definately not, they would have seen it in my eye. I guess I've just got used to having the condition now. I'm still on pred forte - one drop per day and still being treated for glaucoma - cosopt twice daily. I stop the pred forte next week so I guess I'll have another flareup in 10 - 23 days.

Good luck Boroboy with your appointment

Angie

[Mike Bartolatz]

Angie.
please try contacting Professor Ayliffe again and get in to see him so that a corticosteroid sparing approach to treatment can be initiated before the steroids cause more problems with your limited vision. DMARD drugs might be able to stop the recurrent nature of the beast that you have. steroids are not the answer with recurrent uveitis.

It is great that your employer has allowed you to work from home.

wish you the very best,
Mike

[AngieUK]

Thank you Mike, I have emailed Professor Ayliffe again today. Also I have an appointment at the eye clinic in Rotherham next week so I'll enquire if they will refer me.

I have requested the booklet and sent my address

Take care

Angie

[Mike Bartolatz]

you can download the booklet and print it at home rather than get it through the mail which will take quite a bit of time to receive.

I hope Professor Ayliffe will respond to you soon. also hope the eye clinic will refer you to him as well.

good luck and God Bless,
Mike