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Myhedhrts

Constantly drooping eye

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Hi, everyone

  I have had episodic ch for about 20 yrs and I know that when I am having an attack my face gets droopy on the side where it always hurts. Over the past couple of months I have noticed my right eye won’t open up as far as it usually did. It’s like it’s lazy all of a sudden.always pain in my right eye.  I am currently in remission. I wanted to know if anyone had experienced this? Could it be a signal that my glorious remission is almost over? It is hard to explain but I can tell when it’s waking up I can feel it in my body. So far I haven’t felt it. Thanks guys have a good day 

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Myhed', you might want to look into the condition called Horner's syndrome, I think.  People with CH can have it outside of their cycles. The main characteristics, as listed Mayo Clinic are droopy eyelid (ptosis), a persistently small pupil (miosis), slight elevation of the lower lid (sometimes called upside-down ptosis), sunken appearance to the eye, and little or no sweating (anhidrosis) either on the entire side of the face or an isolated patch of skin on the affected side. 

As I understand it, though, Horner's is rarely painful unless there's a more serious underlying condition.  I think your symptoms probably are not a sign that your CH is returning (maybe others will correct me about that), but I think you should have them checked out by a doctor to rule out other causes. An opthalmologist, I would imagine.

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Yeh right after I wrote this I did some research. I think it had to do with my right eye having more of an astigmatism then my left  I guess it’s common with people with that problem. I guess it’s correlation doesn’t mean causation. I appreciate getting back to me though. I’m glad I have a place I can go and ask questions and people get back to me. I appreciate it 

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I had that after a long episode. It would not normalize. I went to the Eye Doctor and was told they could do nothing till I was CH free for two years. It made reading very hard and I love to read.

It took several months, but by reading and lifting the book a bit higher every week or so, the muscles above the eye strengthened and brought the lid back up. I do have lovely wrinkles on that side of my forehead now. But, there is no droop to deal with. 

I have found the pupil constriction to be permanent. It is not a big deal except in low light. It will not expand to allow enough light in to see well. It is better than when in cycle though. 

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I have the same, drooping eye outside of an attack, diminished sensory around the affected eye/forehead/temple, constricted pupil, puffiness and darker circling under/around that eye. All things my neuro, who specialized in clusters, said are normal for chronic and bouts of episodic and most should fade if/when the clusters cut back or are gone for a while. I do not have constant pain, just occasional shadows when not having an attack.

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I also have permanent miosis (pupil that does not come bigger when in the dark) on my right eye.

I went to see an eye doctor several years ago because I was afraid I maybe have some tumor or something. What he did was drops of cocaine in the right eye. If everything is normal, the pupil should suddenly become very big.. what it did. So this took away my worries for something more serious. 

These autonomic symptoms are often weird.. like two days ago, I suddenly felt really unrest and my nose was running as I suddenly go a big cold... the typical symptoms when I am having attacks but absolutely no sign of a headache at all. After an hour or two everything came back to normal.

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I too developed permanent Horner's syndrome a couple of years into my life with CH (about 10 years ago). I think it's just another one of those things we have to live with unfortunately. It's an odd one for sure, because Horner's signals nerve damage somewhere, so on the face of it (pardon the pun) one would think it logically has some connection to CH. But not everyone with CH has Horner's... so we end up chasing our tails again as with so many other branches of investigation.

I've become more sensitive to light as a result I think, but that's just a subjective observation. I don't think it's had much effect on my day to day life which I hope is the same for most others who have it. 

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