Swollen Lids - please any advice?

[Margaret]

again, sorry, new to this sort of posting. Rebecca, I haven't tried anything new that I can think of in the past week. I went to NY and flew on a plane and back and had little to no sleep, etc. and did fine and had a great day at Dr. Latkany's office, etc. and then came home and a few days after things got much worse (maybe because I stopped drops and the dryness caused the aggravating eye lids). Ariel, I know, I know, I've read some of your posts and the depression and anxiety have gotten to me too. I am also on anti-anxiety med, pain killers for my new migranes, and sleep aids. I'm slowly tapering off of all of them, but it's been an amazingly life changing thing for me in this short period of time. When the doctors tell me, "fight this and you will win", it makes me so hopeful on the one hand and then anxious and depressed that I don't know HOW to fight it and the stress of the fact that it's somehow in my control makes me go crazy. And then to top it off, the bad days I can't even use the computer to read all of your great posts to help me through the bad days...

Thanks again,
Margaret

[Ariel]

Hi Margaret--- For me the worst part at this stage is dealing with the unknown, fighting an enemy who's a stranger to you. For as long as it is, it will never be a fair fight, so I'm trying to learn as much as possible, to do it I have to be able to read and right now I can't so it's rough. I don't know if I'd be able to do it if I had children to look after but I live in total seclusion so that's not good either.

I remember the days when having a medical problem meant going to the doctor and letting him take care of things. Unfortunately I don't think it's possible for me to get well if I don't become involved and learn what I'm dealing with. Hopefully we'll find the way to get things under control. Gotta stay positive --whenever possible! There really are truly wonderful people on this forum, some of them may very well be angels in disguise so that's something for both of us to celebrate.

[magoo]

Margaret, have you contacted Dr. L about what has happened? Perhaps going from using a lot of things to nothing at all is just too much. I stopped using all the drops and things (Lotemax, although maybe I'm not technically allergic to it causes a really bad reaction for me and I also was told that it probably didn't do that because it is used to combat inflammation ) but I use non-preserved saline or once in a while some Systane drops.

We all have to find what works best. Since it was Dr L's suggestion that you stop everything I would think he would talk to you about this. Am I right that the very bad swelling started after you stopped all drops?

[Margaret]

I have not contacted Dr. L yet. I will. I have been reading a lot of posts about allergies, which I have seasonal hay fever (although I always considered it mild), so I thought I'd find some insight. I'm sad though to report that Lotemax is the strongest drug on earth it sounds like for allergies and I've been on it for 7 weeks now!

I see my local dry eye doc in a couple of days, we'll see what he has to say.

Any insight on Lotemax not working for allergies, but something else?

Thanks,
Margaret

[Rebecca Petris]

II'm sad though to report that Lotemax is the strongest drug on earth it sounds like for allergies and I've been on it for 7 weeks now!

Strongest drug on earth for allergies? Not sure what you're reading. Lotemax is a low-dose steroid.

Antihistamine drops are usually prescribed for allergies, e.g. patanol, pataday, etc.

[magoo]

I have very good results on the occasions when I have allergies with either Patanol or Pataday.

[mamamax]

Here I am again, obviously I'm going through a very rough patch with my eyes.

I have such swollen lids, especially the upper lids, that it forces my eyelids shut. Which literally means I'm in the dark most of the day. It's been going on for about four days now where I can lift my eyes open enough to see or get on with some sort of day, but if I try to lift my head up and look (like at the screen right now), my eyelids start wanting to close up. Also, along with all of this is a lot of pain.

I just don't hear a lot about swollen lids on this site or anywhere else for that matter. I think i'm obviously not tearing enough so that makes my lids mad which turns on the inflamation on my eyeballs which increases the pain. I have mild MG at this point but I'm sure that will diminish now that my lids are so swollen!

Thanks for any sort of advice.

I use ice packs all the time and it just doesn't do much. That's about all i do. I'm on Lotemax and Azasite and artificial drops which I have a feeling I'm allergic to somehow, but I could be wrong too.

Margaret

I have the same eyelid problem. It's been 6 months now and the only thing that keeps my eyelids open is wearing some type of moisture chamber, such as swim goggles. I bought anti-fog spray which helps. Also, Rebecca's Guard Dog goggles over my glasses helps when I'm out.

[Ariel]

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[Margaret]

Ariel,

I did some googling on keratitis and I'm not sure if I have it or not. I have many of the symptoms that were on the Mayo Clinic's site (eyes red and "hot" looking in half of my eyes, usually the bottom half of the white of my eye on the part under my lid, can't keep my lids open, weird vision, etc.). I don't know how hard it is to detect that sort of infection? On some sites it said it's tough and Mayo said some doc's will actually do a swab and test to see if it's bacterial, viral, etc. If I have it, it's in both eyes, which seems somewhat unlikely, right? It doesn't really mention that wherever I look. I have been taking Lotemax for a couple of months, so I am prone to more problems, so there is another risk factor. I'm also going to the Mayo Clinic at the end of the month. My father goes for heart issues and he LOVES the place and paid for my ticket (so of course I'll go)! I'll see what they say, although it sounds like something you don't want to wait for. I'm also seeing my dry eye dr tomorrow so I'll ask him too. I'll let you know what the doc says. What did your doc's say about your Keratitis? Bacterial, viral?

Good luck,
Margaret