Light sensitivity

[chattabob]

Hello chattabob.

The symptoms you are describing are all very common in people who have chronic fatigue syndrome

I did think that as my eyes are always tired and I always feel tired but I do get plenty of sleep so who knows

[chattabob]

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.

If its only temprary then what is the point in taking them? Is it to confirm the problem has beenpin pointed and can then be treated via another method

[littlemermaid]

Chattabob,
Not easy to read up when your eyes are in pain (we mainly trawl here, PubMed, Medline, Medscape). I hope you can find good dry eye assessment and better diagnosis at this new clinic. It depends which doc we get for consultation, the difference is astonishing. The best is the interested one, not necessarily a consultant. When you re-book an appointment you can usually request a specific doc in the anterior segment clinic.

For us it has been a question of asking advice from different specialists, and finding an ophthalmologist to see regularly to work with on looking after the eyes. Like many people here, we still do not have a diagnosis on the systemic disorder after 3.5y. In UK we do not have coordinated services and computerised notes, or internal medicine specialists. This all gets too specialised for a GP, who can only refer to random consultants' clinics, in our case consecutively to random regional hospitals. We are very grateful indeed that we have had these opportunities in the NHS and for the kindness of the individual docs.

There is no list of specialisms available to GPs and this is why it's useful to research which consultant/clinic you want. There is a lot you can do yourself. The child and I have to manage referral for various parts of the body since the hosp depts have given up communicating and working together, even within one hospital, even with the GP practice (you are lucky if you can see just one GP). But as Ahmed said, you can access your notes and pursue this yourself. You also have to get used to giving a fast concise detailed history, typed up is good. Difficult, therefore, to get attention for systemic disorders like your thyroid sometimes. I have to say trusting one doc, assuming they are in control of treatment and that there is a coordinated management plan has been a huge mistake. Is this your experience? Sounds like your GP is good?

Sounds like you got a cursory look and a ton of steroid this time, which is what LM got during y1 from 2 ant seg consultants. Then at last we found an ophth interested in surface disease who knew how to examine the tear film, eyelid margins, distinguish allergy from infection, with a protocol for maintaining the eyes. What a massive relief.

3wk follow-up is good. They want to help you even though the clinic is in overload (3h wait ). If you find a doc you can work with, you might be able to see them on rota in another clinic. Probably an anterior segment consultant in surface disease + team in a regional teaching hospital, unless you are lucky enough to have a local specialist who is current. If you're getting nowhere you can go private again to the right person just for diagnosis and advice, then keep the NHS follow-up.

Take a list of questions and typed-up history to get more out of these ophth, get your specific questions answered, with a game plan. I think your doubts about FML as a 'treatment' are right because you have been suffering with this many years. All it does is control the inflammation temporarily. In some cases with short-term inflammation a short course does enable the eye to heal, but in the long term not unless other causes are addressed. He should realise this when he sees you again but you need to tell the history more clearly. PM me if you want to talk about who you saw. Even if they can't find a fix they can help you manage this. (Eg LM uses FML in flare-up while we are working on restoring the meibomian glands and eye surface, then with improvement we taper off with other treatments.)

Ask him where in the eye the inflammation is in case it's more widespread and whether there are signs of long-term damage. He thinks it might be the after-effects of conjunctivitis? Viral or bacterial? 10y ago? You could ask about ciclosporin A (Optimmune) and punctal plugs. This would tell you whether they are familiar with current surface treatments.

They should be telling you about: meibomian glands, tear film, inflammation, eye surface damage, allergy signs, what components of your tear film are deficient. I am still wondering who you saw on Harley St?

Have you managed to get your nose swabbed in ENT? You were suspecting sinus fungal/bacterial infection inhaled in the spice factory. What are you doing to clear your sinuses apart from steam? Have you identified allergies causing this sinusitis/rhinitis? Do you have this away from home?

The problem I have over the years is I tend to be seen by a noob all the time wether it be my GP or a specialist so I'm not sure how helpful that is or unhelpful

Try Junior Doctors: Your Life in Their Hands BBC3, Tue 9pm Supervision and team work is a wonderful thing.

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

No they're not bright red normally. Find a friend to check, you'll see red/white, also the MGs stripey yellow-white. We judge by looking under the lower eyelid right down at the bottom. If it's still red right down there, it's inflamed. If there's white, inflammation's getting better or good. You should have seen normal on FML 2xqd by day 2/3, I would've thought (I do not know what I'm talking about here).

Have you had any luck finding a dry eye optometrist as well? (I feel like your mum nagging you to get help or your personal NHS ninja trainer Good luck!)

[chattabob]

I have to say trusting one doc, assuming they are in control of treatment and that there is a coordinated management plan has been a huge mistake. Is this your experience? Sounds like your GP is good?

If you're getting nowhere you can go private again to the right person just for diagnosis and advice, then keep the NHS follow-up.

Take a list of questions and typed-up history to get more out of these ophth, get your specific questions answered, with a game plan. I think your doubts about FML as a 'treatment' are right because you have been suffering with this many years. All it does is control the inflammation temporarily. In some cases with short-term inflammation a short course does enable the eye to heal, but in the long term not unless other causes are addressed. He should realise this when he sees you again but you need to tell the history more clearly. PM me if you want to talk about who you saw. Even if they can't find a fix they can help you manage this. (Eg LM uses FML in flare-up while we are working on restoring the meibomian glands and eye surface, then with improvement we taper off with other treatments.)

Ask him where in the eye the inflammation is in case it's more widespread and whether there are signs of long-term damage. He thinks it might be the after-effects of conjunctivitis? Viral or bacterial? 10y ago? You could ask about ciclosporin A (Optimmune) and punctal plugs. This would tell you whether they are familiar with current surface treatments.

They should be telling you about: meibomian glands, tear film, inflammation, eye surface damage, allergy signs, what components of your tear film are deficient. I am still wondering who you saw on Harley St?

Have you managed to get your nose swabbed in ENT? You were suspecting sinus fungal/bacterial infection inhaled in the spice factory. What are you doing to clear your sinuses apart from steam? Have you identified allergies causing this sinusitis/rhinitis? Do you have this away from home?


Try Junior Doctors: Your Life in Their Hands BBC3, Tue 9pm Supervision and team work is a wonderful thing.


No they're not bright red normally. Find a friend to check, you'll see red/white, also the MGs stripey yellow-white. We judge by looking under the lower eyelid right down at the bottom. If it's still red right down there, it's inflamed. If there's white, inflammation's getting better or good. You should have seen normal on FML 2xqd by day 2/3, I would've thought (I do not know what I'm talking about here).

Have you had any luck finding a dry eye optometrist as well? (I feel like your mum nagging you to get help or your personal NHS ninja trainer Good luck!)

Thanks,

I will start from the top one down....

I wouldnt say my GP is good but we generally decide together where they are going to refer me to.

Private may have to be considered at least that way I feel more comfortable saying I am not happy with the outcome and I've paid for a service.

I will take you up on the PM but will probably not be until the weekend due to being very busy at work

He did mention conjuctivitis and still being inflamed but didnt go into detail about it.

I went to Harley street with a sleep related problem. The other time I went private was for a MRI scan to see if anything obvious was causing my light sensitivity

Still not managed to get my nose swabbed although my sleep consultant said he would tell my GP to arrange this when I next visit them (Just not enough hours in the day to arrange all this though) My sinus's are weird I tend to have trouble breathing through my nose when I lay down, have a shower/bath and just random points throughout the day, a sneaze usually clears it at night but no idea how long for as I fall asleep, other times its just becoming active so going for a bike ride or walk seems to clear them?? I dont understand the whole thing to be honest and what to read into it. Ye my sinus's seem to play up no matter where obviously worse in dusty conditions or going to the city with the smog or an underground tube station.

I've just checked my bottom lid and they are red or pinky, I have some white but it seems to be underneath all the red or between the many veins or vessels?? I checked my brothers and his are different to mine? He's are white... still has some red but not as much as mine.... I'm not the best judge so I'm not going to get my hopes up, I may take a look at someone elses as well so I have more to compare to.

When he shon his light on my top eye lid it killed me! Sooo much pain I they are inflamed will it be both top and bottom inflamed or could it be just the top? Considering the pain is does occur when I look down... or at least I dont feel pain in my bottom lid where as I do at the top.

Oh please do keep nagging me I need it

[littlemermaid]

When he shon his light on my top eye lid it killed me! Sooo much pain

So this is when he is shining the ophthalmoscope light into your eyes, lifting the top eyelid? but you're OK when he pulls down the lower eyelid? so you are feeling the pain in your upper eyelid? and you've had photophobia 10y. And he is talking about inflamed conjunctiva now. But no mention of meibomian glands blocked, tear film, tear deficiencies. Just checking. Just wondered if you'd seen an ophthalmologist on Harley St. As a patient's mum, it makes me angry when docs haven't assessed people well and give the verdict without conferring and we find out later they were not honest or current - patient first

I know full well it's not easy to assess, treat and manage these disorders, and very grateful, and I'm really worried about overload and budget problems, but the NHS has to support people with ongoing eye inflammation. It's not OK for you to walk around undiagnosed and untreated all this time

Maybe ask the Sleep Clinic what systemic disorders could apply to your case (partly to check if they know, heh heh; also, as we were saying, there are autoimmune and endocrine disorders that might start to show like this).

I did think that as my eyes are always tired and I always feel tired but I do get plenty of sleep so who knows

Did you get a copy of your MRI scan in case it's useful for ENT? Has the GP done blood tests?

[chattabob]

To be honest he only pulled my top lid and that where I feel the pain most... its hard to isolate a pain when you can only tolerate the pain for a split second, If I close my eyes and look at the sun my top lids do burn or feel hot, I dont feel any pain in the bottom lids in in bright light but then again I'm not expert.

He said something like "I tooks like you've had conjuctivitis and the imflammation has never gone" To be honest I dont know what he checked probably the basics. I go back on the 23rd so I will make it known I do want a solution

Sleep doc just says can cause eyes to be tired and hence make them painful, weve all been there when we have little sleep and feel discomfort from birght ligts because we are tired. I just assumed all my problems were due to sleep as even when I take a photo of myself or in a group I always look like I've had 12 pints of beer.

blood tests have been done but I never asked for a copy of my MRI as it was back in 2002 and I never though or knew I could have them.

[littlemermaid]

copy of MRI: They may still have it. Ours was £35 for the disk, NHS, Application for Medical Record. Amazingly it installs itself on the laptop, which is very very cool. I thought it could only be read on the high-tec equipment, but no, you can play the whole thing and see your innards. Also you can save any view to .jpg. Obviously, it's better if a doc explains what you're looking at and handles the images with sensitivity and discretion Another way of sharing the MRI between docs is by image transfer, if they're in a linked system.

[chattabob]

I did see the GP after my MRI scan and he said it was fine? Could it be that it wasnt.. Would an MRI be the best scan to have?

[littlemermaid]

Once again, I do not know what I'm talking about. LM had MRI (head and spine), CT (brain) (optic nerve head), ultrasound (back of eye). The paediatrician said MR is less risk, good on contrast and fluids, but CT shows more detail on soft tissue. Portable ultrasound was safest, showed veins and nerves, and went in close. You could PM NeedMyEyes - he's a very kind radiologist.

Do you think you have allergies?

Good luck with the ophth on the 23rd. Important to give them detail on the pain and ask where the inflammation was, eg more widespread than the eye surface or conjunctiva. Is 3h wait normal in that clinic?

[chattabob]

Once again, I do not know what I'm talking about. LM had MRI (head and spine), CT (brain) (optic nerve head), ultrasound (back of eye). The paediatrician said MR is less risk, good on contrast and fluids, but CT shows more detail on soft tissue. Portable ultrasound was safest, showed veins and nerves, and went in close. You could PM NeedMyEyes - he's a very kind radiologist.

Do you think you have allergies?



Good luck with the ophth on the 23rd. Important to give them detail on the pain and ask where the inflammation was, eg more widespread than the eye surface or conjunctiva. Is 3h wait normal in that clinic?

I think 3 hours maybe the norm as it was full when I arrived so I assume everyone arrives at 9am and gets seen one by one.

I have another issue with my eyes aswell that seems to be getting worse, I'm not sure if it's glass's related. Some days I wake up and my vision is perfectly fine and then the next they are all blurred for thw whole day... I struggle to read number plates and road signs and peoples faces are blurred... nothing I do shakes this off its weird... for example if I look down at my keyboard to type or read a news paper and then look up my eyes go really blurry?? Sometimes they refocus but most times they do not

[littlemermaid]

3hr wait: Blimey, is this the 1950s or somewhere very disorganised? Don't they give you a time? Do you want to PM me which clinic this is? Could be you can do better.

I will make it known I do want a solution

Yes, indeed, as much diagnosis as they can give you. And some useful suggestions for managing your eyes better. Is it difficult to manage at work?

They need to give you observations:
-tear film (aqueous deficient or insufficient meibom), tear meniscus
-mgd (is it obstructed glands or insufficient meibom being produced)
-eye surface damage, damage underneath, dry patches
-extent of inflammation (is it more than conjunctiva, eg lacrimal glands)
-signs of allergy (also talk about sinusitis/rhinitis)

That was a high daily dose of steroid although in a short course. We're still wondering what the plan was there and suspect it was 'see what happens'. Ask him if steroid's safe and what the alternatives are (to see if he knows). Ask if they use cyclosporine and punctal plugs.

If it's the bloke who doesn't take photophobia seriously and says he doesn't know what it is, see how much useful info you can get out of him on his observations. Then, I'm ashamed to tell you, you can use his lack of knowledge/diagnosis to get referral to a specialist of your choice (GP - he didn't know what it was, can I see x?) Is he definitely anterior segment?

Please take time to type up your history and tell them in detail about the symptoms. If inflammation is more widespread than the conjunctiva we want them to think about that.

Do you have many floaters?
Are you having on/off blurry vision even while you are on steroid? Could be inflammation/lack of tear film, but maybe see optometrist to see if it's glasses
Are you using computer screens or doing close-up work all day?

Important to keep asking them questions. 'What does ...(eg allergy, infected sinuses, swollen lacrimal gland, chronic mgd, thyroid eye disease, anything else you suspect) look like?' is a very good way to start getting on with and getting the best out of these guys. Wish you good attention and support and a decent management plan.

[chattabob]

I did try glass's the last time I went for an eye test but it made no difference... I think some of it is due to glass's with my vision but most is something else. Like today looking at my TV 6 feet away the little ticker bar at the bottom of the screen for sky news is all blurred... I look down at the floor and back up again and its even more blurred like I've been upside down and had a rush of blood to the head. My sensitivity to light seems like less of a problem now.

i dont have to use the PC much in work which is good but when I do my eyes become blurry again when I lift my head up from the PC.

I'm getting fed up with the whole thing now

[littlemermaid]

I'm getting fed up with the whole thing now

We all are Let's hope they come up with good recommendations for keeping your eyes comfortable that's not tons of steroid. Very good luck tomorrow.

[spmcc]

I look down at the floor and back up again and its even more blurred like I've been upside down and had a rush of blood to the head. My sensitivity to light seems like less of a problem now.

This is a shot in the dark so please take my comment with a large grain of salt and see an ophthalmologist to get a correct diagnosis...

But isn't there something to do with CCh (conjunctival chalasis) and problems looking around? In other words, eye movement exacerbates CCh.

Have you been examined for CCh? Do you have pain in specific areas of your eyes (most often the lower temporal corners)? Do you have foreign-object sensation?

All the best.

[chattabob]

Arrrghhh I feel like crying

They have now gone back to my phoney diagnosis back in 2002 of blepharitis as I had some crusts on my lashes (Not visible to me though) I had just got up and I'm sure everyone has this when they wake??

I asked if my eyelids were still imflamed and she said yes??

I also told the woman I was sceptacle about blepharitis as I had tried the solution before but she still insists I should clean them everyday with johnsons baby shampoo and some water and should notice a difference in 2 days!! not going to happen! and she will see me in two weeks which later change to a month

I asked what next if this did not work and she said they would try something else as difference drops/treatments have different affects... Sounds to me like trial and error at my expense.

She also said my eyes were in good condition for my age and to come back when I have one of my blurry eye days

I also asked if my sinus's could be causing the problem and she said no.

She has also given me something I put under my eyelids at night I think it's a cream and I have one for the left and and right eye.

I may have to consider going private to see what they have to offer or I could spend a a whole lot on prescriptions... she wants me to use tear drops and this cream which is just under 15 quid.

I'm going to entertain the idea that I have blepharitis for a month and then back to the drawing board. I am not happy at all but I have to do this or I am going to get myself into a downward spiral and become depressed as I feel there is never going to be a solution

Can I use wet wipes or do I have to use baby stuff