Light sensitivity

[poppy]

I wish I had thoroughly cleaned them before I went just to see if that changed their diagnosis

I've learned that once a doctor (or one of his colleagues) has made a diagnosis, trying to get them to change their mind is like trying to talk someone out of their religion. Futile and will just cause great offense.

My opinion, if the bleph treatments fail to help, go and see a completely different doctor. Make sure this doctor does not have access to the previous diagnosis of blepharitis (and do not tell him about it).

Tell the doctor only about your symptoms of severe photophobia accompanied by severe pain. Give him examples of how severely the photophobia affects your life, eg maybe you are unable to use a computer or drive. Describe the pain eg deep inside your eyes, NOT surface pain (if that's the case) and rate it out of 10 or give some comparison (eg more painful than childbirth, or breaking your arm or some other painful event). Do not mention to this doctor any other symptoms or medical issues you have that are not absolutely necessary. Be as brief and to the point as possible. If he starts asking dry eye or blepharitis or eye strain type screening questions, deny everything (lie if you have to) so he does not leap on something eg you admit photophobia "might be" worse after using a computer, he will try to blame eye strain or dry eye from computer use. Make him/her work to find an explanation for the severe photophobia accompanied by pain which is the major problem that needs to be explained. Do not confuse the doctor with other symptoms that may have nothing to do with your problem. I have found with doctors it really helps to focus them on the major problem, giving them too much information is not a good thing. Good luck.

[MaryVa61]

I've just got some Johnsons baby shampoo to try but how much do I dilute it? I've tried lid wipes but they make no difference so I'm going to do exactly what the lady asked me to do.

In the US, Johnson's Baby Shampoo contains a formaldehyde-releasing preservative that is a very common contact allergan and the formaldehyde-releasing chemicals turned out to be my primary eye problem, after much investigation by docs. I saw eye docs for 15 years for pain, dryness and a touch of photophobia before this cause was discovered for me. I'm not sure it's a problem in the UK. Johnson's doesn't use the same ingredients worldwide. There has been a lot about it on the news, so Johnson't may be in the process of changing their ingredients, but I'm not sure.

This site contains the list of the 5 most common preservatives to look for on the ingredient label (Quaternium-15), if you scroll down a bit:

http://www.medscape.com/viewarticle/531026_3

I just thought I should mention it because eliminating that group of preservatives has helped me so much, yet most docs don't seem to realize how that allergy can affect the eyes.

Mary in VA

[chattabob]

Very good point. I'm going to have to prevent giving certain information out... I did this time but they had my records to state bleph though, I will have to ask to go somewhere else from scratch so they have no info.

It just annoys me that they cherry pick so much on a diagnosis and I can hear them do it, for example.... I whent to see a sleep specialist about 6 months ago and he started leading me down a certain route with his line of questions... do you collapse or jerk when tired? Do you fall asleep during the day easily? Have you ever had sleep paralysis? I said no to all apart from the last one and thought it might help by saying I did around 6 years ago and then.... I think we need to rule out narcolepsy!! Stupid me for mentioning it as all he was looking for was soemthing he could use against me Needless to say I do not have narcolepsy as I have no symptoms of it at all, my new sleep tech agreed he was wrong.

How much job satisfaction would someone get out of curing me? A great deal as I would have nothing but kind words to say to them

[chattabob]

In the US, Johnson's Baby Shampoo contains a formaldehyde-releasing preservative that is a very common contact allergan and the formaldehyde-releasing chemicals turned out to be my primary eye problem, after much investigation by docs. I saw eye docs for 15 years for pain, dryness and a touch of photophobia before this cause was discovered for me. I'm not sure it's a problem in the UK. Johnson's doesn't use the same ingredients worldwide. There has been a lot about it on the news, so Johnson't may be in the process of changing their ingredients, but I'm not sure.

This site contains the list of the 5 most common preservatives to look for on the ingredient label (Quaternium-15), if you scroll down a bit:

http://www.medscape.com/viewarticle/531026_3

I just thought I should mention it because eliminating that group of preservatives has helped me so much, yet most docs don't seem to realize how that allergy can affect the eyes.

Mary in VA

does anyone in the UK use this as the last thing I want is to cause a real infection

[chattabob]

Well... 4 days away from my next appointment and I am not surpised to say that my eye pain has not improved

If the pain is being caused by my upper eye lid being inflamed what would you recommend I use in terms of eye drops? I'm doing some reading up on Azasite after a PM I received

[MaryVa61]

Chattabob,

It looks like there is not always Quaternium-15 (formaldehyde-releasing) in Johnson's Baby Shampoo that's sold in the UK, or there is a formaldehyde-free version of it available there. But check the label before buying. I just did a web search for the product from a UK company, and Q-15 WAS listed as an ingredient on one pharmacy website in the UK. If you're not allergic, it may not bother your eyes. But it's a pretty common allergy.

http://www.dailymail.co.uk/health/ar...mpaigners.html

http://technorati.com/women/article/...how-mild-pure/

I don't know what drops to recommend for inflammation. I used Acular for years, but became sensitive to it when having the allergic reaction problems. For dryness I like Oasis Plus and Refresh PM.

Mary in VA

[chattabob]

Thanks
MaryVa61

So today the sun has been out... I decide to go for a bike ride and thought I would test a few things with my eyes to try and help the specialists out a bit.

first of all I try to force myself to look in the direction of the sun for as long as I could to see if I can tell where the pain is coming from i.e. my eye or my eye lid... impossible to tell as my eyes just shut and I cannot keep them open so it's hard to know if its my eye that has the pain and triggers my eyes to close as a defence mechanism or if its my actual upper eyelid.

This then got me thinking of some scenarios where I have felt immense pain in the past and that got me thinking of when I go on holiday... I get off the plane and remember feeling the "heat" You know the heat where it can take your breath away as the weather is that hot and the sun is at its hottest... In this scenario I feel the whole of my eye and lid go really hot and again my eyes just close... it doesnt matter where I look as the heat is so unbearable.

My second scenarion was in work when I would go to the bistro, the lamps they have to keep the food warm again really hurts my eyes purely based on the heat. I think in these two scenarios the pain and immflation is in my eyelid and it gets that hot it transfers onto my eye ball.

My third scenario was on the beach again on scorching heat.. I close my eyes but my head and face are facing the sun (To get a tan) Even the heat from the sun burns the inside of my eyelids.... This example is the one I can be most sure of as I can endure this more than the others... I can even feel a reaction and my eye lids kind of contracting and going wild.

Then when I rid my bike home I was facing the sun and whist I was riding I would look up at the sun and for some reason I dont think the pain was as bad and my eyes were not automatically closing, they did water heavily but Im not entirely sure how much pain I was in... I think this was partly to do with the fact that my legs were in pain with the burning from using my muscles riding my bike and maybe this took the pain away from my eyes??

I do know that I do not get the effect everyone else gets when they look at the sun or the sun shines in their eyes... when I look at the sun I see a spot or a light, a bit like a lightbulb where as everyone else gets that kind of filtered effect, like you see on the TV or on a picture you dont just see a spot


Oh and the sauna! Another heated place that I cannot go in with my eyes

[chattabob]

Anyone....

[littlemermaid]

Chatta, Have you thought about allergies causing your sinus and eyelid inflammation yet? Any chance of your GP referring you for testing? You were saying you had sinus trouble and dark circles under the eyes and difficulty sleeping (what did the clinic say about sleep apnoea?). And we are talking about contact sensitivities now. Have you blitzed your bedroom and bathroom for possible suspects and got anti-allergen bedding etc?

(Also you might like to think about food intolerance, which can cause systemic inflammation in unexpected places, not just digestion. We are pursuing this now by strict elimination diet, with GP's approval http://www.nhs.uk/Livewell/Allergies...ationdiet.aspx. First, we are excluding: gluten, yeast, sugar, inc fruit juice, dairy. This is how you discover food triggers; not much is known about this in mainstream medicine, although they are coming round now. We are seeing a definite improvement in periorifical skin inflammation and there is no question of a skin flareup on this diet. This may not be your aetiology, I'm just putting it out there.)

Did you check for meibomian gland dysfunction yet? The girlfriend could do this if you're still reluctant... (PM me!). It would be good to find an ophthalmologist you can talk to (yeh, I know) and I hope you're getting on with the new ophth. We have to accept there's trial and error involved and they're trying to help.

I am finding it useful to talk to lots of docs, we have learned something from everybody; but in the end, we are managing this, trying different things, and looking for solutions and good health ourselves off the internet. I put this to the GP and she pretty much agrees now, esp if it's a systemic inflammatory issue (which it may not be for you), unless it's something obvious she can test or confidently refer for.

Hope you are finding local support on this journey, although your GP and ophth sound kind. You were looking for better regular eye support eg private sector or informed optometrist? This would also give you a pathway back into the NHS ophthalmology clinic if you needed them. (ColinP has been on quite a similar journey trailing round the docs but has got a grip on what makes things better/worse, so if you click on his name you will get his story, or he might be up for PM chat.)

Do you want to post up your regime? Bit worried that you're not doing dry eye maintenance etc.

[chattabob]

Thanks for the reply,

I have thought about allergies and thats where I am at the moment... I've also though about swabbing my eye but I have no idea what this might or might not achieve?? THe sinus things was really thought up after I read a story on here where someone had sinus issues which was causing light sensitivity similar to mine. I've put up with this for 14 years now so Im not sure how good I would be at spotting the symptoms as I am probably use to it by now and wouldnt notice the difference... I know my sinus's do play up more now as I work in a dusty but clean enviroment and the longer the day goes on the more my sinu's block up and completely changes how I sound... all mumbly and bunged up.

The sleep clinic have said I have mild sleep apnoea but do not think this would affect my eyes in this way.

What do you mean by contact sensitive? Another thing I can add to this is my eyes are also sensitive when its overcast aswell and not bright?

Still not checked my gland im afraid just cant go near my eyes and do that

I just dont know what to do for the best really, I would only want to see the best private specialist who is not linked to the NHS i.e not and NHS guy who does privte work aswell

how would I know what anti allergens existed in my room?

My regime has been what the eye doc advised which was baby shampoo but its just not working and I am about to give up on it

[Súil Eile]

Oooh....dusty working environment! That's what set my DES into over drive about 7 years ago. The dust just absorbs moisture, gets in your eyes and irriates them so much. Is there any way you can wear googles while working? I wish I had If I knew what was going to happen I would have worn googles and a face mask. Live and learn I suppose.

About the Johnsons Baby Shampoo - I'm in Ireland and we get the same stuff as the UK and the one I have has no Q-15 in it. Hadn't even thought to look before just now! But I find the shampoo dries my eyes and irritates them. I'm using Supranette wipes, and although expensive they're the best I've found.

Yup, the lamps that keep food warm; patio heaters in beer gardens; open fires;, gas heaters in my gran's house; being anywhere close to a kitchen...it's an absolute minefield for eye pain. I think for me it's that the nerves in my eyes are so sensitive at this stage that it doesn't take much to cause pain.

One of the worst aggravators of my DES is that whoosh of hot air you get when walking into a shop. I walk into and out of every shop with my eyes closed. Can cause a bit of commotion but I've learned to keep an eye out for buggies before I close my eyes!

[chattabob]

The dusty working conditions is very new but ut does seem to have a negative affect on my sinus's.

Ye though heat sources bother me to but not to much apart from the food heat lamp which is just as painful as sunlight

What do you do to control it? Anything?

[chattabob]

Just a quick update...

I have another appointment with the oph tomorrow... My sleep clinic are now done with me despite still being tired all the time, whent last week and I no longer stop breathing in my sleep (with treatment)

The reason I'm posting is because I have lost my patience with the hospital and treatment for both my sleep and eye problems so I thought if I cant find a solution to these problems I will cheer myself up looking after my appearance...

So I've been looking at getting my teeth straightened, nothing hideous but I wanted them doing for a while now. The dentist took xrays of my teeth and mentioned it was an OPG xray, on the way home I was reading the price list she gave me and it mentioned the xray (OPG) within the explanation of it, it mentionedit would show your sinus's so I've looked it up on the internet and it states it's not definate that it will show sinus issues. I emailed the dentist to check if it had shown any problems... she did state that one of my teeth were impacting on my sinus's and I should have it removed if it was causing pain on my left sinus?? I'm not sure I feel pain but I do know it doesnt feel right.

obviously she is only a dentist and I would have to pay for the xray if I wanted a copy. I guess what I want to know is would I feel just pain or would I have other symptoms that you get with sinusitis??

[chattabob]

Looks like the end of the line for me now

Whent to the specialist again yesterday and told them I had been using my eye drops and cleaning my lids every morning but still no difference, she checked my eyes again and said they are clear of blepharitis now and she didnt know what it was, she whent and got the main consultant as she could clearly see I couldnt accept or come to terms with this for the rest of my life He comes in and says Blepharitis would not be causing my extremely sensitive eyes to light so yet again my last appoitment and the two months of cleaning my lids were wasted! I hate the way they choose the fall back diagnosis instead of being honest with me! I could have been scrubbing my lids for the rest of my life hoping that one day it would fix it.

I mentioned a few things like my x-ray and sinus's and also mentioned it all started working in a spice factory dealing with expired and new spices but it made no difference as clearly they need to visually see something and if nothing can be seen nothing can be done

He said he would refer me for a second opinion and I had to make it clear I had no issue or concerns that he was lying to me it's just hard to accept no diagnosis. So I will be going for a second opinion not that it will change anything as I understand they follow a process and things that can be seen.

I'm just sick of the whole thing and it's really getting me down now.

What gets me more down is the fact that the speicalists have no clue how to handle dissapointment, I sit in there office gutted and all they can do is look at the floor and say nothing! Oh actually one of them did say "Your happier now you no longer work outside and work indoors now?" Arrrrgghhhh noooooo I loved my job outdoors so no am not happy! I am sad I had to give up a job I loved for a boring job indoors! Seriously they cannot manage to think what it feels like for the person involved and how it acffects their lives

I mentioned that if he couldnt see anything then it must be in my head?? and he said seeing a councilor might help? I am yet to read a story of anyone being cured of this... all the stories on the internet I read (And thats a lot of them after months and months of looking) everyone seems to just say they wear sunglass's everywhere they go now, I just get so confused how people just accept this.

So what's next for me?

An allergist? Oh I mentioned about getting my eyes swabbed and they said no as they could see no infections. Is Blepharitis not an infection that they treated me for??

A nuorologist?

ENT?

Epilepsy? not that I suffer but my Dad had it and maybe theres a type that just causes photophobia

Is there a technique to transfer pain? As I feel like when I'm working out I dont notice the pain in my eyes so much

find and travel to the best eye specialist?

Go private?

I'm at a complete loss again and I really cannot live with this for my whole life

Help!

[littlemermaid]

Chatta, our friend ~ this is so not the end of the line. Your eyeball guys sound very kind and well meaning but despite their amazing skills in what they do best, and much as we love them, ophth are not the best at diagnosing systemic conditions through the eyes, if this is what you have. Even if they suspect things, they sometimes feel a bit daft referring or even saying to another doc what they are wondering about. They want to stick to fixing the eye part and someone else to do the rest. The problem is who is going to think about this for us because we do not have many internal medicine specialists in UK. It is a very great ophth indeed who thinks and reads about diagnosing unusual conditions through signs in the eye.

So photophobia has many 'differential diagnoses' and you can carry on trawling through eg http://emedicine.medscape.com/ and other diagnosis sites.

Epilepsy would be a neuro - good idea, I didn't know there's a photophobia type. A neuro-ophth is also supposed to know about this type of eye pain although one who knows lots about surface pain is a rare bird.

You were saying you had no change at all to the photophobia on A Big Daily Dose of steroid onto the eye surface (wasn't it 3/day)? Do you have a lack of tear film? Are your eyes definitely completely shut while you sleep (this might explain tired and dry)? maybe try an eye mask or tape to see if it helps?

Do you want to post up symptoms again? It might ring a bell for someone (we're in the Pro section here). You're so right to post. Hope you get input.