Hello, Thank you for reading. 
I have had very bad facial swelling daily, it came on
overnight-causing white pockets around/under my eyes + swollen face,
lips and neck. also my body and hands, it is worse on the right side
of my face/right hand. I have been on diuretics for over a year & at
first they helped alot. I have discontinued them now because it just
aggrivates the retention & you have to take more & more to get
results.
  My swelling is MUCH worse in the morning or after I lay down. I have
seen EVERY kind of specialist you could name & had EVERY
test/mri/cat/blood test you can name-I have had Hashimoto's Thyroid
for years & my levels are normal. Also, I have a LARGE nasal
perforation/hole for about the same time as the swelling. (doctors say
they arent connected).(?)

I have even been sent to a specialized clinic where I was just diagnosed with early
signs of lupus, which everyone says does not cause this sort of facial
swelling/water retention.
My kidneys are fine, I dont take any other meds except for the thyroid
the past 5 years.
Thank you for any information, I cannot find ANYONE else with this
water retention, SWELLING problem. This has been very difficult &
frustrating, causing depression, & isolation.
Thank you for any comments or information.

Hi,

I am sorry to hear about this problem you are having.  It does sound
very unpleasant.  I hope you are able to find the answer and get
treatment.

I wonder about your thyroid levels.  I have Hashimoto's and I "know"
someone (via the internet) who also has Hashimoto's and who reports
that she has this very problem (facial edema) unless her TSH level is
kept around 0.6.  I know some endocrinologists believe in treating
hypothyroidism much more aggressively than others, with some not aware
that even the top acceptable level of TSH has recently been revised
downward to 3.0 from 5.0 (read more here:  
http://www.aace.com/pub/press/releases/2003/index.php?r=20030118).  If
your TSH isn't already under 1.0, it might be worth talking to your
endocrinologist about increasing the dosage of your thyroid medication
to get it there, and see if this helps.

Good luck in your search for an answer/solution.

Best wishes,
bogart99

My daughter has suffered from a similar complaint ever since she was
born. We have never been able to get a medical explanation. She is now
twenty. When she was a baby, her face would be massively swollen on
first waking. It seemed to cause her no pain and would drain away
within a minute or two of her waking. The first few times I saw it, I
thought I'd imagined it because the speed with which it drained away
was astonishing. The extent of the swelling was so great that her eyes
would be reduced to little slits.

The doctor ran several blood tests, all of which came back normal.
While he believed me, he was unable to view the phenomena because it
would drain away so quickly when she first awoke. Similarly, trying to
get a photo was frustrating because she was an incredibly light
sleeper and the condition would disappear as soon as she heard us
creep into the bedroom to photograph it. Fortunately, both my mother
and my eldest daughter also saw it, too. (I really wondered whether I
was going mad for a while!)

As she got older, it seemed to disappear. I thought it might be due to
allergies, so we worked hard to give her fresh, natural food and kept
her out of synthetic clothing: things which I suspected, but had no
proof, may have been contributing to her condition.

Occasionally, during her childhood, she would wake up in the morning
with a massively swollen face but it became much rarer (maybe once a
month), so we learnt to live with it. Now she is twenty, living away
from home and it seems to have returned. She says her head throbs in
the morning when she first wakes up and if she is quick, she can see
it in the mirror for a few seconds.

She says that the swelling sometimes extends down into her torso but
not her arms, legs, hands or feet. It also drains away quickly on
waking. Any suggestions for investigation would be gratefully
appreciated. Doctors look at us blankly when we've approached them.

Good luck Abby. I have no idea if this is related to your problem but
if you get any good answers, we'll be reading them, too.

You may find some answers by googling "angioedema"