Light sensitivity

[poppy]

He started by asking what the problem was so I told him the pain I get with bright lights to which he replied "Use sunglass's" How rude! I told him there is not way I am wearing sunglass's all the time and even that does not gurantee less pain for me.

What an arrogant jerk. I would have wanted to punch him in the face. These docs have no idea what real photophobia is like. I think they believe we are hypochondriacs who are labelling normal light sensitivity (such as when driving on a sunny day without sunglasses) as a medical problem. What drops did he give you?

[chattabob]

Oooh I replied but its not showing...

He gave me two FML qed and offire or offine, I cant read his writing but they are steroids

[chattabob]

Picked up my drops today and it looks like one of them is a tear producer which I have no issues with.

The other I need to take 4 times a day but... seeing as I am a bit squirmish with eyes can I drop it into the corner of my eye down the side of my nose?

[littlemermaid]

Prescription + diagnosis

Chattabob,

Do you want to post up more detail about this prescription and include everything (tear substitutes, antibacterials)? It's printed on the labels. FML qd is A Lot for unidentified inflammation without a diagnosis or plan (do you mean 2 drops or 1 drop?). How long is that for? This eye doc could be hoping it will just go away after blitzing with steroid, unlikely after all this time.

When's your next appointment? If he has given steroid qd for their standard follow-up time without a steroid tapering or improvement regime or a diagnosis or a plan, this is suspicious. Could be a non-starter on causes of inflamed eyes. Was this definitely a cornea/anterior segment clinic? Happiness is indeed a kind and current anterior segment ophthalmologist to work with.

We want a proper assessment of the tear film and meibomian glands and eye surface, and differential diagnosis on possible systemic causes. Not good enough to look carefully and say 'hmmm'. We want to know what they can see. A good way is to ask them a list of prepared questions written down. If nervous, and we are, just hand over the list. They like that, it saves time. They really just want a quick concise history to work on. Ignore superior smirking (mostly do this when they don't know). This way you find out what they do know, which is always useful.

Assuming they checked your vision thoroughly, tested eye pressure, retinas etc?

Also the hospital ophthalmologist should send a diagnosis letter to your GP, so that you can get repeat prescription from GP as needed. You can get a copy of the letter from the GP receptionist to clarify this diagnosis. (If the hosp secretary hasn't typed it you can eg phone up or email the ophth department office, say you can't get repeat prescription from GP without it, can she fax it through, give her GP fax number.) Access to this letter is yours by rights. Any hassle from secretaries, try 'well I'll just leave it with you because I'm finding the pain very difficult' and find someone else more helpful and compassionate.

If no improvement or confidence, consider another GP appointment for advice 'it's getting worse and I don't understand what it is, I'm worried that...'. Particularly help dealing with anxiety and stress, although we know you are with a sleep clinic. The root of the problem may be finding a good ophthalmologist. They are supposed to do our hospital doctor-shopping for us

can I drop it into the corner of my eye down the side of my nose?

No (v sorry if I'm wrong) steroid eyedrops need to go into lower eyelid sac, wipe off any excess from surround skin, we use warm water cotton wool. Gently pull down lower eyelid, tilt head back slightly, drop into that useful sac. Close the eye for a bit and gently press closed the tear drain area (unless the docs want it down the nasolacrimal ducts). All this is to avoid steroid affecting the skin around the eyes or being dropped directly onto the cornea or systemic absorption in chronic use (US FDA site explains about skin thinning, adrenals etc). So this is the risk of dropping steroid onto inner eye corner. We get used to it.

This is cheeky but I'd be considering a PM to our Ahmed at this point, just in case you've got his interest. He's right, some docs would be trying Loratadine just in case there's improvement on an allergy response.

There is still suspicion that the hospital ophth is not respectful or current; humble apologies if he is doing a fine and careful job with useful referral to ENT. We are not happy with sunglasses comment. Sometimes they're just trying to get through somebody else's patient list.

What an arrogant jerk. I would have wanted to punch him in the face

Poppy, LOL.

[chattabob]

5ml FML eye drops 0.1% to be taken 4 times a day for 3 weeks (Fluuorimenthol)
10ml Optive 0.5% drops to be taken twice per day for 3 weeks (Allergan)

Do you need any more information on these?

My next appointment is going to be around the 3 week mark as well (Yet to be confirmed)

when he looked into my eye I dont think he could see anything, when he lifted back my eyelid he said it was inflamed, I can only take his word for it however, it was the worst pain ever when he shon the light on it.

I've no idea what type of consultant was Im afraid.

Eye pressure was apparently checked by a nurse with some gadget, I remember asking what it was.

I will be asking for a copy of what the outcome was as I intend to persue this matter further as they seem to cherry pick the conditions they understand

My anxiety stems from this issue.. imagine having to look at the floor whilst talking to someone outside because its too bright, trying to hude your tears because of the pain.

Regardibg the eyedrops although I drop them into the corner i do pull my lower lid down and let the liquid flow into it, if i didnt i know I would just miss dropping it in for fear of touching my eyeball lol

Who is Ahmed lol

I really hope this consultant is taking this seriously! By the sounds of it he may not be

[littlemermaid]

Hi Chattabob,

I really hope this consultant is taking this seriously!

By the sounds of it, he is - 3 week follow-up is very good. If you don't get a letter this week, maybe phone up on Friday and ask when the appointment is and who's your consultant (just for you to know).

Please let us know if the FML + Optive regime helps. It's difficult but important to let the docs know about the pain and how bad the photophobia is. Also to remind them how long you've been like this.

The photophobia is a usual symptom with eye inflammation - my daughter, LM, cannot see the whiteboard at school some days when her eyes are not so good. The photophobia means she needs help getting the eyes comfortable again. Last week she was indeed wearing sunglasses even to use the computer and suffered an inflammation flareup such that she could not open her eyes To be examined they used anaesthetic drops. She increased FML to 4/day like you and this week she is absolutely happy and fantastic and the eyes are great and we will slowly reduce the FML again. To give you hope that the support of these docs can help you.

It's important to develop a good ongoing relationship with your new consultant and the team. 3h is a shocking long wait, sounds like they're in overload (if it's always this bad, consider going private to the regional teaching hospital anterior segment consultant for diagnosis). I dearly hope this goes well for you and their ongoing support relieves your anxiety and that you can ask the questions you need to about why your eyes are dry and what your tear film is like and whether you have MGD.

Ahmed posted above! Best wishes

[chattabob]

Wow Thank you for the quick reply... Seeing as your here do I need to take both sets of drops... is one for dry eyes? Or am I taking this to counter any affect of the steroid drops...

Most of the consultants I have seen in the past are Indian so I usually thank them at the end in Hindi or ask how they are... The last two I did it to were shocked and then took an interest in me I'm just to drained to make the effort lately

[littlemermaid]

quick reply

Yeh, really bad having wifi in the kitchen when you're supposed to be cooking
http://www.google.co.uk/products/cat...d=0CHUQ8wIwAg# Optive is a normal dry eye bland tear substitute drop. We are using similar ad lib when we need it to keep the tear film good and protect the eye surface. The docs say they are pretty much the same but everyone has their favourites. Hopefully you've got a preservative free version, so that's great.

We leave a gap of about 1/2 hr around active drug-type eyedrops, like FML or antibacterials, so they can work their magic separately. For info on the steroid FML, esp long term use, see US FDA website. The docs should really have made how to use the drops clearer for you, but that's how it is sometimes.

We still don't know whether you have MGD? If you have, this is not being treated unless you are doing warm compress yourself. There would normally be antibacterials or antibiotics.

they seem to cherry pick the conditions they understand

They do. This is a tough one to think about, developing good communication between you is important. I didn't understand before why, after months, a doc would suddenly say something like 'there might be some allergy-type sensitivity going on there' and they'd all have a look and go 'hmm' - I'd been kinda hoping for the definitive diagnosis, possibly the cure. Now I've read more, I think we have to work with what our kind docs observe and know about treatments, working towards the fix, but also think about how to manage and improve things ourselves, being sensitive to what makes it better, what makes it worse. The ophth are not too good about systemic causes and avoid it so you would continue working on that with the GP, unless you've found someone exceptional.

We have seen some fantastic Indian eye doctors, I wish I could thank them in Hindi. Showing an interest in their work is a good one. I'm glad you are comfortable asking them questions about what they're doing, eg the tonometer to measure eye pressure. Hope you get on well with your new team.

[chattabob]

Whats MGD?

[magoo]

MGD=meibomian gland dysfunction

[chattabob]

I think I need to ask my GP or the receptionist what my diagnosis was

[littlemermaid]

Chattabob,
http://www.dryeyezone.com/ Just to make sure you know where we read about different possible causes of dry eyes, on DryEyeZone. This is where the abbreviations are coming from.
http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf
Also, 'the DEWS Report', the 2007 Report of the International Dry Eye Workshop, Tear Film & Ocular Surface Society, 142 pages, download in PDF format.
You might notice symptoms similar to your own in this reading. Also you can search the DryEyeTalk forums by putting a word into the Advanced Search box up there top right.

Maybe ask GP reception for a copy of your letter to the referring GP from the hospital consultant, especially because it will have your prescription. That's what we do. This is your right.

[chattabob]

How long do you think I should allow these eyedrops until they work?

The other day I managed to look at the sun... well lthe direction of the sun without pure pain for the first few seconds.

Also if the under side of my eyelids were inflamed would I know by looking at them? I thought everyones were bright red because of the blood. maybe someone could post me a normal picture as I cant find one on google lol

[mati]

Hello chattabob.

The symptoms you are describing are all very common in people who have chronic fatigue syndrome. The fatigue and photophobia that is and the pain when light is shone into your eyes can be due to adrenal fatigue where the pupil does not contract when light is shone into it whereas it does normally. If you are black or Indian, there is less chance of this condition being recognised.

However, this condition is not a proper diagnosis, it generally just means you are sick and they dont know the reason. Many find out later that they have a bacterial infection called Lyme Disease but there are other infections caught from vectors like tics. Is it possible that there were insects in the spices? Can you remember a bite? Anyway, there are other conditions which cause chronic fatigue but there is not much chance of having it investigated fully by the NHS you will have to find out much yourself. There are no magic bullets for immune dysfunction - natural ways of building up your health are best but there are plenty of forums of people doing it and tips. Our eyes are a good indication of our general health and a holistic means of addressing this is best as well as proper care and diagnosis ofthe eye condition.

We are all full of toxins parasites virusus and bacteria these days and medical doctors cannot help us to get healthy. We have to do the work ourselves. best wishes
mati

ps look into this

http://en.wikipedia.org/wiki/Sarcoidosis

[littlemermaid]

Hi Chattabob,
Maybe read up about Fluorometholone - it's a short course of steroid so it is controlling inflammation and photophobia temporarily rather than fixing anything. The Optive is a tear substitute drop to help maintain a dry eye surface. But they haven't identified the problem yet, esp we want to know whether you have MGD or reduced aqueous tears so you can do treatments for this if it will improve things. FML long term is not advised because of risks so other ways of improving your comfort would be good.

When you go back in 3wk maybe take a good list of questions on what they think is happening to your eyes, and ask for a plan for how to improve things, tell them the whole history again. I'd be reading DryEyeZone again for a checklist, also more treatment options and comfort suggestions. http://www.dryeyezone.com/

So glad you've got to the eye clinic and hopefully found some support and advice.