My Nightmare =(

[Angela]

Hi. I am a 25 yr old female with no (previous) history of eye problems apart from the need to wear reading glasses. I've never worn contacts, never had an eye infection or pink eye. My eyes were the thing that I loved most about myself, and now they are the source of my insecurity, as pathetic as that may sound. About 2 and a half months ago, I woke up with patches of missing eye lashes. I waited about a week (I have no insurance) and when the loss continued, I went to a dermatologist. He saw me for 5 minutes and asked me if I had noticed any scalp hair loss, which I had..it had gotten a lot thinner since my use of Accutane from September- December 2009. He diagnosed me with alopecia areata and prescribed FML ointment which he said might help stimulate the lash follicles. He told me to only use it for 10 days, then take a 2 week break and start again. He made no mention of the possibility that it was anything else. 10 days later my lid margins were itchy, thick and swollen, with what looked like white pimples all along the lashes. This only lasted a few days and I thought it might be a side effect from the FML so I stopped it completely. The swelling went away for the most part, I was on vacation in Italy and noticed that my lids looked a little bit better so I decided to wear makeup to conceal my eyelass bald spots. As a matter of fact, the dermatologist TOLD me I could wear makeup. I realize now that this was a big mistake. When I got back, the lid thickness returned so I immediately made an appointment with an opthamologist. He diagnosed me with anterior blepharitis, told me he saw crusting of the eyelashes and inflammation. Prescribed tobradex drops 4X a day, erythromycin ointment at night, as well as telling me to do warm compresses, and lid scrubs. 2 weeks later things were 100% worse and my lids were even thicker with bumps, a dark purplish color, rapid lash loss, with tons of veins all over the skin. I emailed the eye doc and he sent an electronic prescription to my pharmacy for doxycycline 100mg 2X a day. The symptoms kept progressing, and I began to get dark circles under my eyes and the skin around my eyes became bluish and sore. I also developed a feeling of pressure behind my eyes which was causing headaches. Despite having no insurance, I decided to go to a GP. He examined me and told me I had major inflammation in my nose and told me this was all likely being caused by allergies. I have NO history of allergies, but I considered the idea since this is one of the worst allergy seasons ever. He prescribed FLONASE (a steroid nasal spray) and claritin D, and ran a CBC to check for thyroid function and anemia. The tests came back fine and he told me there wasn't anything more he could do for me other than refer me to an allergist. He also told me to get a neti pot to help clear my sinuses. After a couple days of neti potting, my ears and nose were completely clogged and I was experiencing what felt like vertigo. I had never felt this sick in my life, so I decided to go to the E.R. The doctors were extremely rude to me, not sure if it was because I have no insurance. They told me my nose and throat were inflamed, to get off the doxycycline and prescribed the antibiotic Augmentin for my sinuses. Augmentin made me EXTREMELY sick to my stomach but I took the full 1 week course. At the end of the course, I felt exactly the same and now my eyes had developed a new symptom, "ptosis" Almost like I developed excess skin folds overnight. The sagging starts a little below my eyebrow on my upper eyelids. I frantically went BACK to the eye doctor and asked him what was going on. He examined me and told me that I no longer had blepharitis though he believes I have MGD but wasn't sure what the sagging skin was from. He told me to go back on the doxycycline for the MGD and suggested I go to a ENT and get a CT scan. Of course desperate for help I got an appointment with an ENT. He scoped my sinuses and told me he didn't see any signs of nasal polyps but did see evidence of acid reflux erosion. He sent me for a CT scan which came up clean. So he prescribed me 6 days of oral steroids and avelox antibiotics and sent me on my way. I decided to get a second opinion from an opthamologist. He said I do have MGD. I asked him if he could express them and he told me there was no point "wasting time" and that I could do it myself, though didn't show me how. Told me to keep doing the warm compresses. I went to an allergist the same week who tested me for airborne stuff and everything came up normal. I go back for another round of tests next week.

Now after ALL of these antibiotics and medicines, I still feel completely miserable. Additionally, I've lost my job and spent all of my life savings, thousands, on tests and doctors. My eyes feel HEAVY, like there are weights on them. I have never felt this low. I wake up every day with puffiness underneath and the sagging makes my eyes look completely different, they don't even have the same shape anymore. I am crying writing this. I feel lost and don't have any idea how this happened. The only thing I've attained from doing research is that I have the type of MGD that is caused by oily skin. I have dandruff and suffered from acne for 12 yrs. And from what I've read, the accutane is also a possible cause or contributor. I don't seem to have any real "dry eye" symptoms, not yet at least, as my eyeball doesn't seem to be affected. I don't have any burning or redness. It's just the skin around the eye that seems to be the problem. Though when I look closely at the conjunctiva or the inner top lid, I can now see those little white bumps. I also have a white discharge whenever I do warm compresses or when I wake up in the morning. This morning it was yellow, even though my blood tests showed no sign of infection so I'm not sure if it is the blepharitis coming back. Another thing I have noticed is that the extra folds or creases on my upper eyelids gets really greasy and has a lot of veins and is discolored. I am losing hope. Every day my eyes worsen. I look and feel sick. I've lost my job and my relationships and life is falling apart. I hardly go out and when I do it's only during the day, with sunglasses on. I wouldn't even take them off at my families house yesterday. I have never felt this low in my life. Less than 3 months ago I was a happy and healthy girl and now I'm housebound and depressed. Sooner or later my boyfriend is going to break up with me, I'm sure of this.

Well after all of that venting I am finally ready to ask some questions, I would appreciate any help.

I'm from New York and I've read many posts on this site about Dr. Latkany being a great doctor. However I am almost out of money and I'm sure he is very expensive. But if he is worth it, I am willing to spend whatever I have. Has anyone had their glands expressed by him? Does he charge extra for it?

Has anyone experienced the eyelid sagging like I've described? Is it possibly redundant skin from my lid margin being constantly swollen?

The sagging starts right below my eyebrow and is also in the corners of my eyes, is it possibly my lacrimal gland?

Has anyone experience dark circles from MGD?

Since this seems to be related to my skin, is there anything apart from doxycycline that I should consider using to "unclog" the glands?

I'm sure I have a lot more questions but I will end it here and thank you in advance for any responses.

=( My life has been severely effected by this as I'm sure you can all understand.

[NeedMyEyes]

The eye thing sounds like the "allergic shiner". You could be allergic to something you are putting in your eye like your daily eye drops?

So you have seborrheic dermatitis? I think Nizoral (which I am allergic to) and Gold Bond medicated powder are supposed to work on those.

Also, other things that are supposed to treat MGD (which you may have, but I can't tell for sure) are Lipiflow (expensive and only in Toronto Canada or Europe), IPL (which is available in New York and Philadelphia with the first treatment being something like $200) and the other usual things that I think you talked about - fish oil, doxycycline (which it sounds like you should keep taking), warm compresses etc.

Oh you could also go to an optometrist that does Meibomian Gland Expression. Dr. Mastrota is there in NYC at Omni Eye center. She invented the paddle and it sounds like an expression would give you some relief of your symptoms.

Oh, do you have rosacea? I can't tell. What is your skin complexion?

[Angela]

Hey, thanks for responding =)

I don't think it's eyedrops, this started before I used any. I go back for more allergy testing next week but so far they haven't found anything. I don't know if I have sebborheic dermatitis, I have dandruff but it's not severe..i get a few bumps and flakes on my scalp and no rashy type stuff on my face. Basically my eyelids are a mess and I am getting really upset that no doctor has been willing to help me find the cause. The lid margins are very swollen and purple with bumps and the extra skin folds on the top of my eyelids and in the corners are getting really bad. When I squint my eyes you can see MAJOR lines and wrinkly, it's just not normal. Oh and the extra skin folds in the crease get REALLY greasy. Not sure if that means anything.

I don't have rosacea. I'm pale but no flushing on my face. I had cystic acne that got very bad and last year I took Accutane for it.

Where do they do IPL for $200?! Every place I researched starts at $500 lol. I was thinking of seeing Dr. Latkany but his appointments are $400 and I'm sure that doesn't include testing or expression. It's really frustrating =( I know there's no magic cure but noone can even tell me what is happening and how I can slow it down. It sucks.

[lorca]

greasy scales on eyelid can be a sign of seborrea dermatitis and I wonder if the lines around the eyes are caused by atopic dermatitis??