Eyelid swelling mystery solved!

[Sharon]

Hi all, just wanted to share a symptom success story after searching for answers for so long and finding many others plagued by this symptom with no explanations or successful treatment.

I've been plagued with recurrent eyelid swelling (mostly left eyelid) for about a year and a half now.
It would begin daily from the afternoon causing uneven eyelids and develop as the day progressed, eventually causing one eyelid to droop some days as the swelling got worse. I looked absolutely monstrous and began living a life of more and more solitude, as I was truly embarrassed to be seen in this state. I bought very thick rimmed glasses to try to hide behind, but nothing could hide the actual eyelid drooping. It seemed to get worse during weekdays and subside somewhat during weekends.

I had been to countless dermatologists, eye docs, allergists and neurologists trying to get this properly diagnosed and treated. I had a brain and eye CT scan, MG testing, and my home turned into a pharmacy of eye drops, antihistamines and topical steroid creams, but nothing worked!

Following a long investigative process I finally discovered the culprit:
A formaldehyde hypersensitivity (not a "true allergy" doctors insist, as I consistently test negative for all allergies).
The most toxic source of formaldehyde was at my office and was airborne.
Once I removed the source, the eyelid swelling ceased! 
Seems I was having mostly delayed reactions which made it very difficult to figure all this out.
Again, nothing helped but removing the source of the allergic ("hypersensitive") reaction.

I really hope this post may help others suffering with this condition, as doctors seem to be clueless when it comes to this specific symptom, which I believe is related to immunology.
If you suffer from such eyelid swelling, consider searching for the source of what may be causing your reaction. There are many allergens out there, and we have a hyper reactive immune system.

[Carolina]

I, too, do not have 'true allergies' tho' I even tested positive to everything on the allergy test because I have a 'hyper reaction' to the tests themselves!

My IgE, the culprit in allergies is only one point above the bottom of the range, 5 on a scale of 4-239.

But there are several things that cause a severe reaction, and some things that USED to cause a severe reaction that don't any more.  And I had severe eczema from birth to age 28, but now it's gone.

Go figure.

But at least you found out what was causing the eye swelling.  I'm trying to figure out how you had contact in only one eye, and I guess you work in a laboratory?  or is there formaldehyde floating around in the air of most offices.

And however it you trace this?  Inquiring minds want to know.

Hugs,  Elaine

[Sharon]

Hi Elaine,
My IGE is also on the low side.
I've developed many hypersensitivities over the years to foods, chemicals, materials and even to the sun!
I feel these hypersensitivities trigger my SJS symptoms, as the dry eyes/dry mouth/joint pains/fatigue get much worse following an exposure.
I'm now trying to get tested for Mast Cell Disorder.
Have you ever had such testing done?

In general, the left side of my face seems to be more sensitive than the right (go figure.... )
therefore all my symptoms are far more pronounced on the left side, including hives, nose stuffiness, clogged ear and the parotid gland swelling. Sometimes my right eyelid would join in and begin to swell a bit, but it was far more pronounced on my left eyelid.

Formaldehyde is present in MANY common items found around the house and work places as well as in cosmetics, clothing, furniture, detergents and food preservatives (Google it and prepare to be dazzled  ).
It my case, the most toxic source was soundproofing materials in my work place.   
I traced it after my symptoms got worse and I began pinning things down better, realizing this mostly happened in closed, small, indoor areas. I got a list of the most common indoor allergens and began investigating them one by one.   

[Carolina]

Hmm, i read about Mast Cell Disorder...and it is a frequent accompaniment for those with CVID.  My Immune Deficiency Disorder.  So it is likely I have it.

I can ask my Immunologist to test for it.  I suppose it is worth it....tho' I'm going through so many tests right now I don't want to think about more.

Kudos to you for your detective work in tracking down the problem.

Hugs,  Elaine

[Kathy57]

Sharon,

So glad you finally found out what was causing your eyelid swelling.  I know that you really suffered with it.

How did you get away from the culprit at work?  Did you move to a different room?

Kathy

[Sharon]

Thanks gals! 

I ripped that toxic stuff off the walls and door of my office in a frenzy.
Couldn't imagine spending another moment being exposed to that poison.
I was ill for days after closely interacting with the stuff in this (aggressive) manner.
But now it's gone!

[jazzlover]

Great!! So glad you figured it out!!

You'll have to be extremely careful about buying any new flooring or carpets, etc from now on.

Here's some new info on MCAS .. basically it's a review of Dr Lawrence Afrin's new book.. but contains a lot of basic info on MCAS.

http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/

[Sharon]

Thanks Jazz!
I am currently pursuing a diagnosis of MCAD
(and not buying any new anything for now!).
That's a good link, thanks! Interesting it mentions benzos as a treatment option, as I had begun to suspect they help calm down the immune response.
I do notice the "allergic" reactions seem to trigger my SJS. 
Does this happen to you as well?
May I ask how you treat your MCAD and if treating it helps your SJS symptoms as well?

[SunshineDaydream]

Nice to hear good news on the board, Sharon. Glad to hear you finally figured out what was causing your eyelid swelling. I know that has been a longstanding and severe issue for you. What a relief you are no longer suffering with that. What an obscure cause! I'm impressed you were able to figure it out.

[Sharon]

Thank you Sunshine!
Yes, it was my most persistent symptom and wouldn't respond to any treatment.
I'm glad to be able to post something positive.
"Only" took me over a year to figure out....
Unfortunately, there are always more symptoms to tend to with these illnesses.

[jazzlover]

I have so many issues that I don't know which ones are actually from SJS besides the dryness. My worst dryness is in my eyes, but it's better since reducing salicylates in foods. I think oxalates also affect the dry eyes.

I am being treated with cromolyn sodium, which I take 4 times a day with water. (ampules mixed in water)

It is helping the neurological symptoms and my stomach pain. I'm still working on being able to eat more foods. I'm severely limited in my foods.

Hope you can find a doctor near you!

[Sharon]

Jazz- This is really interesting, as all my dryness issues get all that worse
after I'm exposed to an allergen or after any physical activity. They kinda flare up.
I'm beginning to wonder if MCAD is behind all of it or if I have both SJS and MCAD.
I do have a positive ANA and RNP/a which indicates connective tissue disease of some kind.   
Are you sero-positive for SJS?
Have you tried cromolyn sodium eye drops?

I was diagnosed many years ago with IBS because of all my gastro issues, but now I'm suspecting they too may stem from the MCAD.
There seems to be a department for mast cell study in one hospital here, but it's in another city.
Just the trip there will send me flaring, I'm sure.