Light sensitivity

[MaryVa61]

I suspect you'll not find answers with eye doctors and need to focus on other specialties in your search now, as you mentioned. For me the allergist and dermatologist were most helpful, once they thought "outside the box".

I had some positive reactions to the dermatologist's tests for type IV hypersensitivities and once I got the chemicals out of my house that I was sensitive to my eyes got much, much better. Those hypersensitivities (aka skin allergies) affect my eyes far more than they affect my skin. It's the inner lids that were actually inflamed badly, and that caused stringy mucus that irritated the eye itself too. Or that's how it seemed.

Since then I've learned that I probably have a mast cell activation problem and have gone on treatment for that and it's helping me a great deal. It isn't specifically about eyes, but since it's related to allergy I do wonder if it's all connected. Treatment is helping my energy level, mood, and tremendously helping my GI problems.

I also used to be hyperthyroid (was tired and tense rather than hyper) but that was treated several years ago, before my eye problem peaked.

Good luck with your search for help. I know how it feels to be desperate for help and not be able to find a doc that gets it. But perseverance paid off for me and I hope it does for you too.

Mary

[littlemermaid]

Chatta, Have you seen a dermatologist?

Showing the docs a list of your complete symptoms and drug history is a brilliant idea and might lead to someone successfully diagnosing you. Type it up very close together and short so it's easy to read, but make it complete. We do: date, short symptoms note, doc comment, drug and dose. It saves a massive amount of time. Until we finally get coordinated NHS electronic records, in our dreams.

[chattabob]

Chatta, Have you seen a dermatologist?

Showing the docs a list of your complete symptoms and drug history is a brilliant idea and might lead to someone successfully diagnosing you. Type it up very close together and short so it's easy to read, but make it complete. We do: date, short symptoms note, doc comment, drug and dose. It saves a massive amount of time. Until we finally get coordinated NHS electronic records, in our dreams.

I was going to just bullet point it all and maybe highlight symptoms that come and go.

I've just remembered another symptom that happened right before all this started. I could feel like electrical charges at the back of my head or brain and I also had some sleep paralasys leading up to it

[chattabob]

I suspect you'll not find answers with eye doctors and need to focus on other specialties in your search now, as you mentioned. For me the allergist and dermatologist were most helpful, once they thought "outside the box".

I had some positive reactions to the dermatologist's tests for type IV hypersensitivities and once I got the chemicals out of my house that I was sensitive to my eyes got much, much better. Those hypersensitivities (aka skin allergies) affect my eyes far more than they affect my skin. It's the inner lids that were actually inflamed badly, and that caused stringy mucus that irritated the eye itself too. Or that's how it seemed.

Since then I've learned that I probably have a mast cell activation problem and have gone on treatment for that and it's helping me a great deal. It isn't specifically about eyes, but since it's related to allergy I do wonder if it's all connected. Treatment is helping my energy level, mood, and tremendously helping my GI problems.

I also used to be hyperthyroid (was tired and tense rather than hyper) but that was treated several years ago, before my eye problem peaked.

Good luck with your search for help. I know how it feels to be desperate for help and not be able to find a doc that gets it. But perseverance paid off for me and I hope it does for you too.

Mary

I think I need to see a dematologist but I need to not get carried away.. I think if someone is going to find out what is wrong with me it will be a fluke when I am least expecting it.

Things are coming back to me now about how I use to feel with my symptoms...

3 big things today that I noticed when I had the rash over my cheekbones

1) The rash flakes and is dry and hot

2) When I had this rash nine years ago I had phases when I felt like jelly like today as well

3) I get angry and it comes from nowhere for no reason.

Oh and I struggle to get a full breath

I'm a chilled and laid back person normally and I know these 3 symptoms don't really go together but thats what I noticed then and thats what I notice now

[spmcc]

Hi Chattabob,

I PMd you but I'll repeat some things here.

It sounds like your rash is seborrheic dermatitis. When you mentionted ketoconazole, it was a big clue.

Seb derm is definitely linked to blepharitis... and then could lead to photophobia as your main (only?) symptom of dry eye.

Seb derm is chronic so you wouldn't have just one outbreak, use cream and have it go away forever. You'll need to treat this for life (don't panic... it's not too hard to do! But you do have to do it.)

You should definitely see a dermatologist to confirm a diagnosis and get a complete list of all the things you should be doing to control the problem.

Just FYI - I was diagnosed with rosacea and seb derm in 1985. Many other members of my family have these also. It's just one curse of being English/Irish!!! God save the Queen.

All the best.

[spmcc]

Also, have you seen Mike's post? - http://www.dryeyezone.com/talk/showt...is-eye-problem...

[chattabob]

Hi Chattabob,

I PMd you but I'll repeat some things here.

It sounds like your rash is seborrheic dermatitis. When you mentionted ketoconazole, it was a big clue.

Seb derm is definitely linked to blepharitis... and then could lead to photophobia as your main (only?) symptom of dry eye.

Seb derm is chronic so you wouldn't have just one outbreak, use cream and have it go away forever. You'll need to treat this for life (don't panic... it's not too hard to do! But you do have to do it.)

You should definitely see a dermatologist to confirm a diagnosis and get a complete list of all the things you should be doing to control the problem.

Just FYI - I was diagnosed with rosacea and seb derm in 1985. Many other members of my family have these also. It's just one curse of being English/Irish!!! God save the Queen.

All the best.

Thanks,

That gives me something else to look into.


To be honest though this has only just flared up again after 10 years? And before that I had left it untreated for about 3 years.

Also my eye specialist despite saying it was blepharitis now says that it's not?

My scalp has dandruff again since this flared up and has also been very greasy where I have had to wash it every day (Short hair) well it was more like every half a day it became greasy.

I got a list from my GP the other day and I was prescribed that nizoral (Mentioned above) and also the shampoo but I never bothered with the shampoo.

Is it at all possible that Blepharitis or the skin inflamation can be deep rooted on the inside of my skin? I.e not being visible to the naked eye or somehow causing me a problem with my eye sensitivity from behind my eye?

The reason I ask this is it seems the specialist has now ruled out bleph as the issue even though she said she could see debris but now cannot?

I nitice that this cream can also be obtained in an oral form and I am thinking maybe that could clear up what I can't see?

I also have no problem with life long As long as life long means there is a treatment that works for me

[littlemermaid]

Chatta, As Spmcc says, are you reading up about sebaceous dermatitis and seborrheic blepharitis and rosacea now and how sebaceous skin conditions affect the eye glands? Normally they would check meibomian glands by gently pressing, as we were saying before. Not just according to debris. We are finding it's important not to worry too much about labelling the disorders but to carefully treat each problem. Sounds like you've got some solutions there. An optometrist asked me today what the disease was called and I said 'you can call it whatever means most to you'. Can you get a dermatologist referral and tell them you have bad photophobia from this?

[spmcc]

I've posted already about this book that I'm reading (Rosacea: Diagnosis and Management by Frank C. Powell (2009). He's a Dublin dermatologist who wrote the book for other MDs/derms).

He has chapters on the different subtypes of rosacea: red-flushing rosacea*(ETTR), papular-pustular rosacea (PPR), ocular rosacea (OR) and more.

In the chapter on PPR, he talks about rash-type outbreaks and seborrheic dermatitis (among many other things).

In the chapter on OR, he talks about debris on the lashes and photophobia (also among many other things).

I think it's very important that you see a dermatologist who can diagnose you and oversee your treatments. There are lots of things to try. The hope would be, of course, that your eye symptoms decrease or go away!

*red-flushing rosacea is my term to explain ETTR. See http://www.rosacea.org/class/classysystem.php

[littlemermaid]

http://www.nejm.org/doi/full/10.1056/NEJMcp042829
'Rosacea', Frank C. Powell, The New England Journal of Medicine 2005; 352:793-803 February 24, 2005 (free text, good starter summary). For his recent research on eg inflammatory pathways, PubMed 'Powell F derm'. Thanks for the book, Spmcc.

Also, PubMed 'Gallo Richard' in San Diego.

Also, PubMed 'Del Rosso James Q' in Las Vegas (thanks spmcc)
http://www.ncbi.nlm.nih.gov/pmc/arti...9/?tool=pubmed J Clin Aesthet Dermatol. 2012 March; 5(3): 16–25 'Advances in Understanding and Managing Rosacea: Parts 1 & 2, Connecting the Dots Between Pathophysiological Mechanisms and Common Clinical Features of Rosacea with Emphasis on Vascular Changes and Facial Erythema', James Q. Del Rosso
http://ukpmc.ac.uk/articles/PMC29239...TlT9llu4HM9y.8 J Clin Aesthet Dermatol. 2009 November; 2(11): 14–17 'Seborrheic Dermatitis and Malassezia species, How Are They Related?' Grace K. Kim, DO

http://rosacea-support.org/
http://rosacea-research.org/wiki/ind...itle=Main_Page

Chattabob, You're telling us you might have seb derm and rosacea-type symptoms, although an open mind is still important. We are finding that sometimes dermatologists leap to a rosacea diagnosis based on face skin symptoms without considering other systemic inflammatory disorders.

Keep up the blepharitis treatments and try to examine the meibom yourself so you know what's happening. Did the ophth do this for you?

[hirentherock]

hi chatabob
as we have discussed on pm, please visit bsl center before getting more frustrated and check the results.
many have found it a last helping resort for pain and photofobia.
as i told u even im in same condition.Im 30 and probably wont get any decent gal to marry even.That doesnt mean its end of life.

Have faith and courage and arrange bsl test asap.
Keep faith intact

[hirentherock]

im living with a few undiagnosed deceases.
1-nasal congestion
2-extreme photofobia
3-constant cough
4-double vision(no doc wants to diagnose it and tells me if its not that much disturbing then dont need to think about it)
Im living with these from age of 8!

Now i have been able to make myself understand that i have to live with these.
There is no use spending money where there is no concrete diagnose is available.Have tried enough.I have got used to pain.that is obvious as it is with me from childhood.

I understand this as, just like some people can nvr look beautiful.No matter how hard they try,
some people cant get rich,No matter how hard they work.
The same way we fall in such a category for physical illnesses.Which we have to bear with.

At least i have explained these to my mind and brain as well.I try to be happy.Pushing my mind to keep busy with something else where i can remember less about my pain.

Though it doesnt mean i do not do anything about my problems.I keep updated with DES and try to co relate my symptoms with others and make myself a doctor!!Thats what all of us try to do.Aint we?