Light sensitivity

[chattabob]

To be honest I dont know mate.. he did mention conjuctivitis but looks like they have changed that diagnosis now.

I cannot bear the pain but I have tried in the last few weeks to look in the direction of bright lights and I think the pain is in my top eyelids and they spasm when bright light occurs.

I think the steriods helped in that a can tolerate bright light for a little bit longer but not much considering the dosage and having to use my drops four times a day.

No foreign objects in my eyes and they dont feel dry... Not sure why I am being asked to still use the tear drops and use them more than twice a say??

[littlemermaid]

Chattabob,

Well I think that went well... although I'm feeling for the doc too - you are really suffering the fear and frustration of this, as we all are. If it is chronic bleph we need to maintain clear meibom every day otherwise we do not get remission, then eye surface gets inflamed, spiral to worsening etc. So hopefully you're on a spiral to improvement now with some decent, regular, ongoing, free, ophth support.

I know you're not feeling it, but IME you are actually getting fantastic NHS service... (Follow-up 4wk compared to 3/yr we were offered) and she wants you back on open access as soon as you get blurry vision. Seriously, they want to help look after you, with an investigative approach, and it's free. It's not like getting your car fixed or scrapped although it would be great if we could drop the eyeballs off for someone else to fix and collect later.

As you say, let us assume for 4wk that it is chronic blepharitis. You are right, treatment for that is trial and error because people's eyes respond differently, as she says, but it is to your benefit. She sounds a lot more careful and caring than the last bloke. You can ask for her again so she can adjust the treatment according to what's happening, and she will get to know your eyes and history well. As you read up about eyes, you are looking for someone you can talk to.

Is it antibacterial cream to help clear the MGs? We still don't know what the state of your MGs is - have you checked yourself? Topical antibacterial also has anti-inflammatory action - prevents possible bacterial build-up in clogged MGs pumping inflammatory enzymes, also helps block your own inflammation process.

Some docs don't recommend baby shampoo unless they see sebaceous-type blepharitis, just warm water, but whatever works for you. We've tried different wipes etc but went back to steam and hot water, except in inflammation when we use cold things.

Are you off the steroid now then?

What does she think about tear film/tearing? You are not feeling dry? We use artificial tears to maintain the eye surface while we clear the MGs but LM is desensitised. Maybe get used to checking tear film in the mirror.

Normally they recommend flaxseed/fish oil to adjust meibom, unless it's obvious seb bleph. IME meat and processed fats are really bad for meibom, dairy is suspicious, sugar is inflammatory for LM. The absolute worst is those unidentified fats in take-aways and donut stalls. Some are suspiciously emulsified at room temp, and all are changed at molecular level by superhot reheating. We are looking for light, clear oils, liquid at low temps.

We use a humidifier, also dry wet towels on bedroom radiator, clear dusty junk out, clean computer. She's not keen on goggles but needs them for computer.

We also wash hair with anti-dandruff or tea tree shampoo and this seems to help with our type of blepharitis.

LM, who definitely does have chronic bleph, goes for weekend sleepover, wants to 'be like everybody else', eats bad-cheese pizza, skips 2/day warm compress and cleaning, doesn't use tear substitute drops, then quickly worsens to eye surface inflammation, chalazia, photophobia. Then she's back on steroid, which we had previously successfully tapered to minimum. Maybe even back to hospital with the eye surface trashed again. Ophth misses breakfast/lunch yet again to squeeze her in emergency to packed clinic. Are you feeling my/the doc's frustration too with people not doing the bleph treatment every day? (this is your surrogate mum nagging you, since you request it...) Let us focus on working out what makes it better/worse.

£15 for NHS prescription is good, private is £45+ even before you've paid full price for meds.

Read ColinP on depression, anxiety, he put up some good posts on this. Stress hormones are inflammatory, so one day at a time eh?

Hope you get improvement these 4wks, or work out what helps/makes things worse, and if not, sounds like they're happy to work with you and reconsider diagnosis. Does your bro know about all this stuff you're dealing with?

[chattabob]

Thank you for your continued support and putting things into perspective, its true that are following through on things but it does feel like they dont know what it is and that really bothers and upsets me And the fact that she read my notes of a previous diagnosis of blepharitis and it sounded like she went "That will do" we will just pick the easy option and tell him to try treating it again even though it didnt work last time.

she did say come back when my eyes were bad but I had already stated they were bad the same day but she chose to ignore that and said ring up when it goes worse.

Would bleph show any visible signs just by looking at someone?

She has given me fusidic acid 1% eye drops... one for my left eye and one for my right??

how do I check my MG?

so can I use warm water? and with what? How long do I scrub my lids for?

Yeah I am off the steroids now, she said my eyes were good. She said keep using the dry eye drops but my eyes are not dry at all.

i remember in 2002 when they diagnosed bleph I changed my shampoo, showered every day and placed a warm wet flannel over my eyes for ten minutes to open up my glands or whatever they are and then clean them after that so I know I have tried

[littlemermaid]

Yes, they would look for visible signs of bleph, like microscopic debris at base of eyelashes - search Medscape, even NHS.

Yep, we use Fucidic Acid ophth, well tolerated.

Aha, check the MGs with 2 fingers, press gently upwards under lower eyelash line, examine eyelid margin in very well-lit mirror or magnifying mirror, look for tiny row of dots of oil (clear excellent, yellowish or white toothpaste consistency needs work - see videos on YouTube). Blurry vision also means oils pumped out into tear film, hopefully, even if you can't see oil dots.

Keep going with flannel treatment in case the new regime fixes it this time with the antibacterials as well. We're taking flaxseed/fish oil and reducing clogging fats to improve meibom. If this doesn't work and you still have mgd, they'll probably move on to oral antibiotics + punctal plugs (see NHS clinical guidelines). (We have actually had remission of mgd, and the reoccurence is entirely due to the derm.)

What shampoo you using daily now? Any chance of tea tree or Head & Shoulders sensitive?

What was the change on the 4/day steroid? Did you notice differences? Is the blurry vision new?

But you have obvious allergy signs don't you - dark circles under eyes, rhinitis? Any chance of vit/mineral deficiencies or food intolerances?

Make sure you drink lots of fresh water. Improving all these things is helping us keep the eyes good.

Be nice to the docs and work with them. If it's not recalcitrant mgd then one of them might recognise what it is.

[chattabob]

Yes, they would look for visible signs of bleph.

I still find this hard to beleive that something that is not visible to the human eye can cause so much pain



Yep, we use Fucidic Acid ophth, well tolerated.

From the leafelt on this I could not figure out if this is for bleph or just immflamation



Aha, check the MGs with 2 fingers, press gently upwards under lower eyelash line, examine eyelid margin in very well-lit mirror or magnifying mirror, look for tiny row of dots of oil (clear excellent, yellowish or white toothpaste consistency needs work - see videos on YouTube). Blurry vision also means oils pumped out into tear film, hopefully, even if you can't see oil dots.

Eww I can see me having trouble with this as I hate anything going near my eyes... why couldnt the

Keep going with flannel treatment in case the new regime fixes it this time with the antibacterials as well. We're taking flaxseed/fish oil and reducing clogging fats to improve meibom. If this doesn't work and you still have mgd, they'll probably move on to oral antibiotics

Think Id prefer oral stuff lol


What shampoo you using daily now? Any chance of tea tree or Head & Shoulders sensitive?

I use head and shoulders... Although when diagnosed in 2002 after reading up on bleph I changed to T Gel

What was the change on the 4/day steroid? Did you notice differences? Is the blurry vision new?

Ye blurry is not new I'd say the last 2-3 years but its now getting worse.... After the steroids I felt I was able to tollerate light for 3 or 4 seconds longer but I dont know if this is a good sign or bad considering the dosage


But you have obvious allergy signs don't you - dark circles under eyes, rhinitis? Any chance of vit/mineral deficiencies or food intolerances?

Afraid I do have dark circles, I thought this was sleep related but I have no idea, my eyes look so heavy as if I do nothing but drink beer all day. I've looked at some pictures of me when I was younger and my eyes were wide open and now they look really heavy and are more closed now. How would I knowif I had any deficiencies? I;ve had blood tests and nothing was mentioned so I assume not.

Make sure you drink lots of fresh water. Improving all these things is helping us keep the eyes good.

For the last month and a half I have comletley cut out fizzy drinks, chocolate and crisps... All I drink now is water and fresh orange

Be nice to the docs and work with them. If it's not recalcitrant mgd then one of them might recognise what it is.

Very hard to be nice but I try They need to be more caring even if they cannot diagnose me

[littlemermaid]

Topical antibacterial also has anti-inflammatory action - prevents possible bacterial build-up in clogged MGs pumping inflammatory enzymes, also helps block your own inflammation process.

Fucithalmic is topical antibacterial.

Are you not trying flaxseed or fish oils then (to improve the meibom)?

Heavy eyes: Could be a dry eye thing, one ophth was amazed LM didn't feel heavy eyelids. If you can't 'feel dryness', could be your surfaces are desensitised after 10y. I wonder what your tear film actually looks like.

TGel is quite powerful stuff every day, isn't it? Some people like to rotate, like dijon84 (right-click his name, view past posts).

I agree, caring helps. What do we have to do to get a decent dry eye assessment? I don't understand why they don't give us a checklist run down on what they see then we can ask questions. We once had an ophth who did this and it was heaven.

How's the blurry vision on increased artifical tears? LM says, tell him she can't see sometimes then gets vision back by bunging in tear drops and playing phone games returns the focussing... She thinks you're maybe not blinking while watching TV and looking at computer.

[chattabob]

I think I'm immune to medicines and drops lol

Those tear drops do nothing for me at all apart from add to my expenses...

I dont use T gel anymore but I use to because I thought it would help and would have done anything to cure it.

I know I said this last time but I am going to have to ask for my records

[littlemermaid]

Chattabob ~ What do you think your condition might be? All your symptoms are consistent with dry eyes but you are thinking your eyes are not dry and tear drops are making no difference - do you think there is a systemic problem?

If it's not mgd I think you would see clear meibom easily. Of course, improvement on regular warm compress + antibacs + omega 3 oils would take longer than this.

It would be good to know for sure whether you have mgd, tear film deficiencies, or inflammation from other causes.

Then we would have a better idea what's actually happening. Bit worried that you're not comfortable touching your eyes - does this mean it is chronic blepharitis since 2002 but you haven't been treating it (you did request nagging...)? www.moorfields.nhs.uk/portal.../files/Blepharitis_teens_final.pdf

[chattabob]

Im not to sure... I think it may be some kind of immflamation as that is where I feel the pain. If I'm on holiday sunbathing and I close my eyes the sun still seems to get through and this is when I feel the pain in my top eyelids... and seeing as the eye doc has said they are inflamed it kind of adds up but treating it seems to be another issue

[littlemermaid]

It would be good to know why your cheeks got so hot before - any chance of getting the notes? It seems relevant. There are people here with similar autoimmune symptoms. I think maybe read up on autoimmune conditions, esp with vascular or connective tissue symptoms. These AI conditions are identifed by blood tests specific to the suspected conditions. That is tough to diagnose or even get a good referral, I think it's rheumatology. Any history in the family eg grandparents?
http://labtestsonline.org/understand...immune?start=1

[chattabob]

Im not sure the GP knows why my cheeks were hot, again I think it was just trial and error and one cream worked

Would these come up on just a normal blood test,, aby particular autoimmune Im looking at as there seem to be quite a few listed on the lonk

[littlemermaid]

I don't know, let's hope for some help on this. Let's still assume you have ongoing mgd though, if the ophth say so. Have you checked the meibom? Your GP record will tell you what the cream was. Maybe look back up your thread - Mati was asking whether your pupils contracted in light? MaryVA61 was saying she recognised similar symptoms and got relief from eliminating allergens. I am looking for an MD with an interest in holistic therapy like nutrition for LM's chronic inflammation and hypersensitivity, and I'll let you know if we have any useful progress.

[chattabob]

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.

Also... I'm back onto sinus questions lol,I stayed out last night and the heat in the room was that hot I couldnt breath through my nose as it became all blocked... I'm also getting a really blocked nose in work as it must be a bit dusty, it starts affecting my speech and I sound all muffled.

Also last night I had my pciture taken with my girlfriend and my face is all bloated I have noticed this before but the picture really made me think eeewww... I'm not overweight, don't do drugs and hardly ever drink beer which I think can bloat you.

I've read this can be caused by your sinus's?

[poppy]

This is one thing that really annoys me about eye docs... Severe photophobia and severe pain are NOT common symptoms of blepharitis or dry eye, unless there is significant corneal involvement. And blepharitis and dry eye do NOT usually cause major corneal involvement. Yet all eye docs seem to assume that simply because they can observe some inflammation or crusting of the eyelids, then the cause of all your problems must be simply blepharitis and all symptoms and corneal issues (if they exist) are dismissed as a non-vision threatening issue. I think this is negligent. Blepharitis is a common problem, and just because chattabob seems to have some doesn't mean that's causing the photophobia.

chattabob, have they ever done a dilated eye exam? Photophobia could be caused by some issue inside the eye. I have never been able to get a doc to do a dilated eye exam despite repeatadly complaining of severe pain (including inside the eye, not surface pain), severe floaters and severe photophobia as well as having tons of external inflammation and corneal damage. Apparantely, most eye docs are so good they can tell there is nothing wrong inside your eye without needing to actually look (psychic diagnostic skills). One doc I had was also so good that she was able to diagnose my corneal ulcer as being "just blepharitis" without even applying any dyes to see it better, and all within the space of a 2 second glance at the surface of my eye. I look forward to seeing one that is able to diagnose me without even using a slit lamp. Better yet, why do these guys even need to see us at all. Next they will be able to diagnose us over the phone, without even listening to our symptoms (phone psychic)!

[chattabob]

Poppy that is exactly how I feel! You have summed it up just how I wish I could have

They did dilate my eyes the first time (The ones that make your eyes go all blurry) To be honest I think he just gave up as I could not keep my eyes open for even a second with the light he was shining in my eye so I doubt he did a proper examination or even was able to due to my extreme pain.

I knew, I just knew at some point they were going to blame Blepharitis again! It's an easy out for them....Im sure first thing in the morning everyone would have microscopic crumbs on their lids, I wish I had thoroughly cleaned them before I went just to see if that changed their diagnosis