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Of all the things that could be bothering me, this has somehow reached the top of the list. I guess because it can be really obvious and makes me feel so self conscious.

It's only my left eye. The upper eyelid droops - not all the time, but I'm noticing it more and more. I have a bit of eczema on that eyelid that won't go away no matter what I try, so I'm wondering if that's contributing. I asked my neuro about it and she surprised the heck out of me by saying that she already had it in her notes. Meaning that she had noticed it at a previous visit. On her own, because I know I'd never thought to mention it to her.

Yeah, she's a neurologist and it's her job to notice this stuff, but now I'm paranoid that I'm walking around looking like I've had a stroke and everyone is just too polite to point it out (everyone besides my mother and two of my close friends, that is. "what the heck is wrong with your eye!!" haha).

Is this a POTS thing? Is there any way to make it less noticeable?

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Hiya,

I completely understand how you feel. I developed ptosis out of the blue in January 2007, it affects my right eye (mainly sometimes the left eye joins in as well which leaves me unable to see at all). My eyebrow also droops and the right side of my mouth can droop as well. I have it to varying degrees everyday - midodrine helps stop this but no one knows why, it also responds to mestinon which lead to me being tested for myasthenia gravis for a few years.

I have a picture of my ptosis on my blog the address is in my signature. I tend to wear very big sunglasses when its very bad as I like you feel disfigured when it happens. When Ive spoken to the drs about the way it makes me feel they dont seem to appreciate the effect it has on my self confidence.

I also find the ptosis messes up my vision - I have depth perecption issues, peripheral vision loss and when both eyes close completely I am totally without sight which has a massive impact on me being able to look after myself. I also find even if the ptosis resolves my eyesight remains blurred for hours afterwards.

No one has ever gotten to the bottom of why I have ptosis, but I like you really hate this symptom.

Rach

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You are not alone; I too, have this symptom, and is worse when I am symptomatic. Blurred vision, double vision and unequal pupils at times, too. I was tested for Myasthenia Gravis, but it came back negative. I believe it is the Dysautonomia...sorry :( I never know when my vision will be bad either, and when both eyes are effected, I can't drive, and only go short distances, so I understand your problem. Wish I had a solution. I think I may go to a neuro-opthamologist. I will talk with my neurologist in September, when I go back to see him.

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Wow... I didn't know that was a POTS problem. I also have it, but not as bad you all. Mine is my left eye. I notice it when I'm having a "spell" of feeling bad. Come to think of it, that's when I have the pain from my left sinus area and my left knee swells too... all wax and wane. That's bad having it affect your vision!! Is surgery possible?

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happens to me and is described in the autoimmune autonomic gangliopathy. Think of autoantibodies clogging and activating a3 and perhaps other autonomic receptors. Could also occur in some type of neuropathy

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Same. Mine is my left eye and it seems to come and go. I also at times have abnormal pupils. Really not sure what causes it, though I have definite periods of time when it is worse than others. I have looked in to Horners Syndrome, though I do not fit nicely into that diagnosis. (I sweat evenly on my face, and have dilation rather than constriction of the gimpy eye).

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I don't have ptosis, but the left side of my mouth is droopy every morning when I get up. Over a few hours it returns to normal. Maybe related?

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