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        Cluster Headache Help and Support >> Cluster Headache Specific >> Droopy eyelid - How long does it last?
        
(Message started by: Annette on Oct 20^th, 2007, 8:33pm)

Title: Droopy eyelid - How long does it last?
Post by Annette on Oct 20^th, 2007, 8:33pm

Hello everyone

How long does the droopy eyelid last for after a cycle has finished?

Daniel has been out of cycle for more than 5 months now but the eyelid on his cluster side is still droopy. If he conciously forces it to open he can, but it droops by itself most of the time and makes him look like he is half asleep.

Can it be permanent?

Title: Re: Droopy eyelid - How long does it last?
Post by Shedz on Oct 20^th, 2007, 8:38pm

I have no idea if it can become permanent, mines usually ok after a hit, all my symptoms dissappear soon after the meds kick in, but I always have a dull shadow or bruised fealing to the side of my head all way through my cycle.

Paul.

Title: Re: Droopy eyelid - How long does it last?
Post by Annette on Oct 20^th, 2007, 8:51pm

Thanks Paul

Daniels eyelid was almost always droopy while he was in cycle but I thought it would have gone back to normal after 5 months painfree.

I sure hope its not permanent !

Title: Re: Droopy eyelid - How long does it last?
Post by Wayne on Oct 20^th, 2007, 9:46pm

My eyelid is always droopy, I have to concentrate to open it if I have a photo taken.

Title: Re: Droopy eyelid - How long does it last?
Post by Annette on Oct 20^th, 2007, 10:47pm

Wayne, are you episodic or chronic ? Did it happen after your first cycle?

Title: Re: Droopy eyelid - How long does it last?
Post by BarbaraD on Oct 21^st, 2007, 6:41am

Annette,

Most Chers I've met, I can usually tell which side they get hit on because of their eyes. I'm not sure the eyelid ever goes back to "normal". I'm chronic so I know mine doesn't. But the episodics I've met are usually easy to tell on also.

Daniel had a long episode so maybe it will go back to "fairly" normal soon, but I wouldn't worry about it. It will or won't.

Hugs BD

Title: Re: Droopy eyelid - How long does it last?
Post by Wayne on Oct 21^st, 2007, 7:11am

on 10/20/07 at 22:47:17, Annette wrote:

Wayne, are you episodic or chronic ? Did it happen after your first cycle?

Annette, I've been episodic for 5 years now, but this is a really long cycle. My eye used to droop even between cycles, not as pronounced but definitely noticeable.

Title: Re: Droopy eyelid - How long does it last?
Post by barry_sword on Oct 21^st, 2007, 7:28am

Annette, here is my droopy eyelid story. My cluster side (right) eyelid would droop very bad but found when I came out of cycle (which last about 2 years for me) it proceeded to get worse. I became quite camera shy because I was ashamed on how I looked. Eventually the eyelid was pretty much shut all the time. My vision was failing.

I went to get my eyes tested and to read a chart I had to physically lift my right eyelid to be able to read the numbers and letters.

I was referred to a surgeon who is one of the best with dealing with this. I had laser eyelid surgery but he did both eyelids to "match or even" them up. He said he did not remove any excess skin "this time" which tells me I will be back someday to have this done again. So far so good.

I am in no way saying surgery is the answer for a droopy eyelid but mine became a permanent problem so he fixed it.

There is a lot of people out there with a droopy eyelid, I guess one notices more when we have it ourselves. Tell Daniel for me not to worry about it too much unless it starts to effect his life like mine did.

Sorry for the novel.
Barry :)

Title: Re: Droopy eyelid - How long does it last?
Post by Mikella on Oct 21^st, 2007, 8:51am

I totally agree with Barry; unless it's affecting your vision, try not to worry.. nobody is perfect. I am, however, self conscious as well.. so I do understand. My eyes are permanently affected, and it gets worse when I'm hit. Pictures bother me.. but other than that, it's rare that someone notices, unless I'm on the verge of being hit.

Title: Re: Droopy eyelid - How long does it last?
Post by Annette on Oct 21^st, 2007, 11:04am

Thanks Barbara, Barry and Mikella,

Daniels droopy eyelid is fairly noticeable most of the time, sometimes its worse than others. He is starting to dislike taking photos as well. Thank goodness we have digital camera now and can retake another photo if the first one didnt come out right but it makes him very self concious.

We also gets weird loosk from people who I am sure were wondering whether he was on drug just because of the way he looks. We both found this rather upsetting.

Barry, I am sorry to hear yours got so bad that you needed surgery for it. I hope it will last forever for you so that you wont have to do it again.

I hope Daniels eyelid will get better with time but if its like this after 5 months somehow I think its as good as it will ever be.

Title: Re: Droopy eyelid - How long does it last?
Post by Mikella on Oct 21^st, 2007, 11:52am

Hmm, Annette, I guess it sounds like it may be fairly noticeable.. moreso than mine I'm guessing. How old is Daniel? Maybe seeing a doctor and talking specifically about his eye would give him peace of mind, and let him know a bit more about what's going on.. whether or not it could improve, or no. I'm not sure if a general doctor would be of help when it comes to something like that or not. Does he wear glasses or contacts? If so, he could maybe think about getting a pair of glasses that take a bit of attention away from his eyes.. there are lots of great styles of glasses out there. Or.... maybe this is a silly idea, but it's worth mentioning... if he doesn't wear glasses, what about just getting a pair of frame's with no prescription in them? Just clear lenses? And he could wear them when he's self conscious and out and about. And not worry about it when he's with family, friends, etc. <3 Just some thoughts.

Title: Re: Droopy eyelid - How long does it last?
Post by Annette on Oct 21^st, 2007, 12:02pm

Thanks Mikella for the great suggestion.

Daniel is 33 and yes I guess the droopy lid is rather noticeable. He already wears dark sunglasses whenever he is outside, partly because the bright sun ( we are in late spring/early summer now ) still bothers him. Its when he is inside and without the dark sunglasses that its harder to hide it.

We have already checked with our neuro who told us that it should get better, but it hasnt.

Daniel also has reading glasses but he hates wearing them all the time. It hurts his nosebridege and his ears. I am as blind as a bat without mine ( I am very short sighted ) so I have to wear glasses or contact lenses all the time and I know how annoying it is.

Hopefully it will get a bit better so that it wont be so noticeable.

Title: Re: Droopy eyelid - How long does it last?
Post by Mikella on Oct 21^st, 2007, 12:11pm

So I guess the "fake glasses" thing is out of the question :( Unless he was able to somehow find a pair that didn't feel uncomfortable on the bridge of his nose which may not be possible. I hope his eye improves..

Is Daniel your husband?

Could you ask him (or you may know) does having anything touch the bridge of his nose trigger an intense nauseating pain?? I've always experienced this, and I'm curious to know if anybody else does. If he does too, he will be the first person I've ever heard of that that happens to as well. I never wore sunglasses when I was little because of this.. and I can only rarely wear them now.. which sucks because the sun makes my head hurt soo much worse. I have reading glasses, but I HATE wearing them for the same reason. Nothing can touch the bridge of my nose......

Title: Re: Droopy eyelid - How long does it last?
Post by Annette on Oct 21^st, 2007, 12:42pm

Thanks Mikella. Yes, Daniel is my husband, he is the one with CH, I am his supporter.

I asked him and he said he doesnt get pain on the top of the nosebridge but during the cycle and especially during a hit, the left side of his nosebridge is very tender to touch ( he is a leftie ). I guess it makes sense because the trigeminal nerve does reach as far as the side of the nose. Is this what you meant?

Title: Re: Droopy eyelid - How long does it last?
Post by Mikella on Oct 21^st, 2007, 1:35pm

Thanks, Annette.. I was just curious. My experience is a bit different. At any point in time in the last 10+ years, if something rests on the bridge of my nose, I'm ready to throw up.. yuck. It triggers pain around my eyebrows, eyes, nose, maxillary sinus, stuff me up.. weird.. I get sooo nauseous. And yes, like your hubby, during hits, to touch, the affected areas are quite painful on that side of my face.

Weird stuff.

Title: Re: Droopy eyelid - How long does it last?
Post by BMoneeTheMoneeMan on Oct 21^st, 2007, 7:37pm

My eye has been droopy for a couple of years now. It was quite pronounced. In the last couple of months it has become less droopy, but is still quite pronounced.

Title: Re: Droopy eyelid - How long does it last?
Post by Annette on Oct 21^st, 2007, 7:48pm

Hi MoneyMan, long time no talk :)

I am glad to hear that after 2 years there was still improvement to have on this droopy business ;)

Thanks for giving me hope :-*

Title: Re: Droopy eyelid - How long does it last?
Post by the_old_man on Oct 21^st, 2007, 7:48pm

My eyelid droops on the ch side whether in or out of cycle. It's been that way for about 5 years now. My wife says it's sexy and makes me look like I have bedroom eyes. That's all that matters to me. What others may think doesn't matter. Everyone has something that's not quite perfect or symetrical. If it's just a droopy eyelid, I'm thankful. Tell him not to be selfconcious. Just look at the ears or nose on some people. He'll feel better then.

The Old Man

Title: Re: Droopy eyelid - How long does it last?
Post by Annette on Oct 21^st, 2007, 8:06pm

Thank you very much The Old Man for a very insightful opinion on the matter.

It is so very true that everyone has something not quite symmetrical in appearance.

I guess we were upset because we expected it to be back to normal once the cycle finished. But if we now know that it is a common side effect of the condition and that many others have the same problem, it would be a bit easier to accept and cope with.

Practical knowledge is vital. Thats why its so important to be able to speak to people who have personal experience and understand how we feel.

Thanks all :-*