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Eyelid Swelling, Anyone?


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Does anyone else get gnarly eyelid swelling at night? I am wondering if this is POTS related or something else? It's mostly my upper lids - they are comically puffed up in the morning. I started having this symptom when my bad flare up happened (Oct. last year) and am still having it almost every morning.

I have been looking into Sjogrens, and wondering if it's a comorbid w/ my POTS. Rich's post about his Sjogren's diagnosis got me interested in following up that lead possibly with my optometrist?

- Michelle

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I have bletharitis, which is the inflammation of the eye lids. I currently am taking erythromycin ointment at night, and cleaning my eyelids with baby shampoo at night, too. I also have severe dry eye, and fragile corneas, so I take preservative free drops, supposedly every hour, but I forget a lot. I have been tested for Sjogren's, which was negative, but no one ever did a lip biopsy, which is the most accurate way to test for it. I may have to be put on Restasis. Since we are chronically dehydrated, this doesn't surprise me. I also get lip infections, which is weird, but nothing surprises me anymore. :rolleyes:

I went to a corneal specialist, because I couldn't see well at all to drive, after going to a neuro- opthamologist, who couldn't see my retina through my cloudy corneas! :huh:

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Hi Kimbell, thanks for the info. You know, my grandma has blepharitis. I suppose I could try a titch of her ointment at night to see if my eyes clear up in the morning (she has erythromycin). That's actually a very interesting idea. :) Does the baby shampoo further dry your eyes? And do you notice a difference with preservative-free eyedrops? Just curious about that as I'm sure my drops are not preservative free.

Sorry for the 20 questions, BTW. :)

Your cloudy corneas symptom does not sound good at all! :(

I need to post a picture of my eyelid swelling. There is kind of a pouch above the inner eye corner, and it's totally pooched out in the morning. I wondered if it's an irritated gland or ?? It does not look like the blepharitis I've seen, but I suppose it could present differently in different people. I rarely have much for eye crusties, either.

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Guest Alex

Michelle,

I used to have this issue with florinef, but not anymore. I'm not sure if it was the same thing you're describing though. My upper eyelids were swollen, but so were my fingers and my feet/ankles. This was an issue particularly in the morning.

The swelling went away after I came off florinef and it's no longer an issue with me unless my salt/water intake is too high.

Hope you figure things out soon.

Alex

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Thanks Alex, interesting that Florinef caused it for you! I had my puffy eyes a few months before going on Florinef, and it started all at once. No other major signs of edema from Florinef, it really doesn't seem to bloat me up too much. Well, other than my chest. :unsure: Ugh.

I will try to grab a picture of the eyelid puffies in the next day or two, I think it would be good to show my optometrist and I can post it here.

How much water intake did you find detrimental? I am trying to limit to 1 gallon per day, but it's tough. I'm very thirsty all the time, though it has been better since I added some bicarbonate to my electrolyte mix... I probably should test my saliva pH and see if I'm acidic, since alkalyzing is relieving. I wondered if being acidic might make my tears acidic and irritating, too.

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Guest Alex

Michelle,

my water intake is well below 1 gallon (2-2.5 L a day, I rarely exceed that) but when I was following my dr's advice ad literam I did drink up to 1 gallon of fluids a day. I'm actually more suspicious of the extra salt as causing water retention - for ex yesterday I drank a cup of V8 with 1/2 teaspoon of salt added - needless to say, this morning my eyelids were swollen.

Ever considered the possibility of an allergic reaction?

Alex

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Hi Alex, I have considered allergies, for sure. I switched from a feather pillow to a foam one recently so that's not it. Don't use any fabric softeners, etc. The weird thing is I don't have any daytime allergies at all (I live on a farm). No issues with rhinits or congestion in the morning... I even switched from using normal moisturizers around my eye to occasionally using either avocado oil or coconut oil, which I also use in daytime with no issue.

I just have not a clue, though I'm thinking that some of my stuff may be autoimmune (Sjogrens in particular) and am heading to the optometrist in early July to have him check my eyes out. I get crazy red dry eyes in the late evening, I look like a heavy pot smoker around 8:00 PM. :)

Wow, 2L a day. I can't even imagine how that is survivable. :o I do eat a lot of liquid food, and I count that in my intake (Fitday calculates it for me).

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Guest Alex

Sorry I can't be of more help.

I don't know much about Sjogrens except for the fact that it usually presents with dry eyes/mouth, so it may be worth looking into that.

Best of luck. I hope you get some answers soon.

Alex

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Michelle,

Sorry, I haven't been on line in a while...I find that the baby shampoo is helping, and definitely the preservative free tears. My eyes feel so much better. I am wearing glasses at present, but may have to get special contacts that hold liquid on my cornea, if at all. I am not tearing all the time the way I used to either, so it's a definite improvement!! Let us know what your opthamologist says...but those of us who have dysautonomia have a myriad of eye issues, anyway, unfortunately. :(

Kim

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  • 2 weeks later...

I have upper eyelid swelling periodically as well. My doctor has never been able to figure it out. There doesn't seem to be a pattern to why it happens when it happens. I do have dry eyes. At one time, the dry eye was severe enough that I had to have puncta plugs. My eye doctor says that they have improved, possibly because I added a fish oil supplement. But the eye lid swelling is still a mystery.

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