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Posted by: guy123 ® 08/06/2008, 17:31:26 |
I'm 27. When I was 17 I started doing these hard blinks (hard enough that my eyebrows scrunch down) to relieve an uncomfortable sensation in my eyes. This was happening all the time. I went to an eye doctor who said I had rosacea or something in my eyes and gave me some drops that I used for 2 years with no improvement. I got busy with college and stuff and kind of forgot about it. Recently I decided I want to know what is wrong with me and fix it. I went to my doctor who said he thinks I've developed a tic related to some imbalance of serotonin or dopamine or norepinephrine or something. But he said first he wants to rule out an eye-related problem. So today I went to an eye doctor who said that *maybe* I have blepharospasm. But of course I wasn't blinking today because my eyes weren't bothering me (it's like when your car is making a funny noise and you take it to the mechanic and then it stops making the noise). And as soon as I left the eye clinic, they started back up again. I told the doctor that I had heard of beltharospasm and I thought it was a *involuntary* blinking condition. I definitely have control over my blinking, it's just the sensation or pressure builds up so badly that I have to blink to relieve it. I wouldn't call it completely involuntary. So does that sound like bletharospasm to you? My eye doctor told me that there's no cure and it gets worse as you get older, but she said it's treatable with botox. I told her I had read about that online (for treating tics) and some people say that it relieves the movement but doesn't relieve the sensation so they're left with an "unscratchable itch" type of thing. So my questions are: 1. Does the blinking that accompanies bletharospasm actually *involuntary*, or is it a conscious blink designed to relieve an uncomfortable sensation in the eye? 2. Does it come and go? Is it worse some days than other days? Like I said, this morning and thru the eye doctor visit I was fine, but now it's being terribly and I'm blinking hard every few seconds to relieve the sensation.
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Posted by: Anita in Ohio ® 08/06/2008, 19:52:23 |
Some people may describe blepharospasm as blinking, but others refer to it as a spasm in both eyes. Blepharospasm is involunatry closure of eyelids. First, I recommend that you contact the Benign Essential Blepharospasm Research Foundation at bebrf@blepharospasm.org and ask for a doctor near you that may make the proper diagnosis. Then you will know if you have blepharospasm and the doctor should be able to treat you properly. I might mention that I know a fellow who went to the doctor's office and if it was not very light in the office, he would not have spasms, but the moment he would enter a light spot, even outdoors, his eyes would begin to spasm or act up. The doctor finally had to take this patient outdoors to make the proper diagnosis. Most people with blepharospasm are light sensitive.
In answer to question No.2, when I first came down with it, I had some days that were better than others and as days went on, my eyelids clamped shut to the point that I could not push my eyelids open with my fingers. To find my way through my home, I used a cane so that I would not fall. The balance was even bad. Get in touch with BEB Foundation and see a doctor that can make the proper diagnosis. Good luck. Anita Croce, North Central District Director, BEBRF |
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Posted by: Lynn Yarbrough ® 08/06/2008, 19:52:40 |
Hi, Guy, and welcome to our Bulletin Board. The short answer is: Yes, you probably do have BEB, and it's going to get worse before it gets better. I say this not as a doctor, which I'm not, but as a long-term patient since 1960. And I think you will need to revise your thinking about your problem before you will fully understand it. You made a couple of observations that are very familiar to BEB patients, in particular about the symptoms going away when you try to show your doctor what's happening. Several of us have made good use of the little cameras in cell phones: you snap a pic when the spasms are at their worst, and show the phone to your doctor so he can see what he's treating. It also helps YOU to see what's happening, since your eyes are always closed when it's happening. My answer to your first question is that the 'uncomfortable sensation' you describe is actually a spasm involving the ring of muscles around your eye socket. Yes, it is involuntary, and it lasts for several seconds, long enough to cause an auto accident if you're driving. Normal blinks only last about 1/5 second. It does come and go, and is indeed worse on some days than others. Truth is, the spasms are essentialy random and utterly unpredictable. One way to describe what's going on is that your 7th cranial nerve, the one that controls your facial muscles, is misfiring. That's caused by the chemical imbalances your doctor described. So far we don't know of any effective way to stop the random spasms except to paralyze the muscle by putting the nerve to sleep for a few months (actually your regeneration times for dead nerves.) That's done with Botox injections, which I've had done since 1990. If you stop getting them longer than your regeneration period, the nerve does regenerate and resumes misfiring. Sadly, we don't know of an effective cure. So you're stuck with the injection regimen until someone comes up with a better understanding of the problems and learns to apply it. So far, it's Botox and its cousins. Good luck, --- Lynn |
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Posted by: pdb ® 08/06/2008, 20:28:34 |
Hi Guy, I endorse Lynn's comment about the frequency of "white coat" syndrome, that drives away symptoms when you turn up for an exam - happens to me almost all the time. So just one tip in support of Lynn's suggestion that you take pictures of it. If it happens while you are working on a PC, a good trick is to use a web cam and just leave it running recording your face. With adequate (bad) luck, you will end up with several spasm/blink segments recorded, and some simple web cam movie editing tools can take the video down to just the bits that show the eyes closing. As you are 27 I'll rashly assume you are adequately of the computer generation to handle that. In my case I found putting my movie onto my iPhone worked out really well. And re whether you have Blepharospasm or not, it's possible you have a dystonic tic, whose net effect is very similar, and whose treatment is the same. I had a couple of neurologists arguing about whether that was what I had, but the verdict came down on the Bleph side for me. Anyway, giving a recommended Bleph specialist Dr. video or photo evidence will help them sort out what it is. The other thing you will learn from this web site and other reading is that there is enormous difference in how it manifests itself across a group of people. Some blink at a really rapid rate, others (e.g. me) have no rapid blinking symptoms, but suffer from strong muscular involuntary closing of the eyelids - or lighter spasms that just close the eyes and don't let them open until they decide for themselves. Some have severe dry eye, and there is a lot of variation on how photophobic people are. I also started out thinking that I was doing the eyelid closures deliberately, but within 6 months it was clear that deliberate had nothing to do with it. Interesting that you've had it 10 years apparently without much in the way of change of symptoms. One other thing re what your Dr. told you - for most people it seems to settle down after a period of years, and if I were you I would not regard it as inevitable that it will gradually get worse and worse. Maybe because you are younger than most with it, it will take a while to get to that stable state. Hope all this is helpful information for you - just remember we responders are not Doctors, but have followed this thing closely and so can give opinions based on our own experience and that of others we've read about. Cheers Peter Modified by pdb at Wed, Aug 06, 2008, 20:34:22 |
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Posted by: guy123 ® 08/06/2008, 23:05:57 |
Yeah. In the 10 years I've had this never once have my eyes closed on their own, or stayed closed on their own. In fact, I'd say it hasn't changed much at all in those 10 years. My family has told me it's gotten a bit better, but I think it's just that I've become more aware of it and am better able to suppress it when I know people are looking at me. I'm thinking it's more a tic of some sort. My biggest fear is that if it IS some sort of tic disorder, that it might change into something else. Eye blinking is bad enough but is relatively easy to make excuses for when people ask "hey, why are you blinking so much?" But if it were to change to other common tics like shoulder shrugging or neck jerking, that would be much worse. Questions about botox: 1. Does it relieve the sensation of "having to blink hard?" 2. How do they paralyze the "hard blinking" muscles without paralyzing the "normal closing your eyes" muscles? Can you still close your eyes normally? Can you still go to sleep normally? What if the procedures goes wrong and you can't close your eyes for 3 months? 3. Can you still move your eyebrows? Most of the treatments for tics don't sound too good. A lot of traditional medications involve antipsychotics (neuroleptics) which have horrible side-effect profiles (such as the creation of new, irreversible tics). Also sometimes the blood pressure medicines Clonidine and Guanfacine are used. I've also read some good things about Marinol (derived from THC) being used to calm tics/Tourettes. Anyway, I think I will record some movies of me on my cell phone camera and show those to the doctor. Oh, the eye doctor did say I had dry eyes. She gave me some eye drops. edit - oh, RE: the length of blinks. Sometimes I blink for longer than 1/5 of a second when I'm doing my "hard blinks" (probably closer to .5 seconds to 1 second). This is because I really have to "squeeze" my eyes hard to relieve the sensation. But I can always open them again as soon as I'm done. I've noticed that sometimes in order to make it feel like I'm generating even more pressure in my eyes (to relieve the sensation), after my eyes are closed I will roll them up and back into my head. This feels like it generates more "tension" which helps relieve the uncomfortable sensation. I'm also aware that rolling eyes back can be a tic so that also makes me think I have some tic disorder. Thanks for the replies.
Modified by guy123 at Wed, Aug 06, 2008, 23:22:59 |
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Posted by: flipflops22 ® 08/08/2008, 17:19:03 |
I do the same thing as you...squeeze my eyes shut to make them feel better. I also roll my eyes back and this helps me too!
However, I do have apraxia too where my eyelids feel like magnets and sometimes when I blink (without the squeezing) it is hard for me to get them open again!! I hope you will stay in touch and let me know if you find anything that helps your "squeezing" blinks!!! |
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Posted by: Shirley Barr in New Mexico ® 08/08/2008, 18:25:09 |
Hello, You've gotten a wide variety of responses so I thought that I would throw my two cents worth in too....:-) Blepharospasm...in the broadest sense of the word...is any eyelid spasm...be it from a tic, dry eyes, irritants, allergies or mis-firing of the 7th Cranial Nerve. In Benign Essential Blepharospasm (BEB) or Primary Blepharospasm, the eyelids unpredictably and involuntarily clamp shut the eyes, leaving the victim functionally blind until the spasm ceases in a few seconds or few minutes (or longer). There is no known cause or cure for Benign Essential Blepharospasm...only knowledge of the fact that it appears to be a problem in the basal ganglia of the brain. From the way that you describe your own symptoms, in my opinion, it does not sound like BEB. To me it sounds more like a "tic" of some kind...which can also be a neurological thing. A neurologist who specializes in Movement Disorders would be most knowledgeable about whatever it is. It was suggested that you take a video clip in to your doctor and I totally agree with this. Whatever is causing the eyelid spasm, it can probably be treated with Botox injections. Yes, there can be side-effects and some doctors are better at injecting than others. Your treatment would have to be determined by your physician and you would have to weigh the pros and cons...just like with any other medications that you might try. Do take care of the "dry eye" problem no matter what your other diagnosis turns out to be. If you have to use eye drops long term, the preservative-free ones are the way to go due to the possibility of the preservatives causing sensitivities/irritation and corneal damage over time. It may be difficult to get a firm diagnosis and you may wind up just treating for symptoms if the problem is annoying enough. Just to make this a bit longer (LOL)...I'm reminded of when I was working as a school nurse and was asked by the teacher to sit in on a class and observe a young man. He was very bright and well behaved but the teacher was concerned about his "tic". The young man would be sitting quietly and all of a sudden would have a very hard eye blink and then would jerk his head to the side and then he would smooth out his hair and seemed to relax more and all was well for maybe 30 seconds...sometimes longer...when the process would repeat itself. Sometimes things were better and sometimes worse. The teacher was quite concerned. I later called the young man into my office and talked with him about it. He told me that he was aware of it and could stop it at any time. He did not know what caused it and said that it was just something that he did. I did not see the behavior in our private one on one visit. After calling his parents and discussing things with them, they informed me that they were also aware of the behavior but weren't concerned about it as the young man could stop it when asked to. They took him to a doctor and the doctor did not see the behavior and told the parents that the young man was fine and not to worry. The parents were unhappy with me for costing them a doctor's office visit. Sadly it appeared that the only people concerned about this kid was the teacher and myself. I still wonder how that kid is doing and it's been 15 years! Sorry to get off on my soapbox... Best of luck to you...let us know how you do and what you find out. You're welcome on our forum no matter if you have a "tic, frequent blinking, eyelid spasms, sustained eyelid closure or just can't get your eyes open"! Shirley in New Mexico
Modified by Shirley Barr in New Mexico at Fri, Aug 08, 2008, 18:29:40 |
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Posted by: bluebird ® 08/07/2008, 08:41:34 |
As people have said, few people have exactly the same experience with this "malady". I am not sure from your post what kind of doctor(s) you have seen. If you have not seen a neurologist who specializes in movement disorders or a neuro-opthamologist familiar with BEB, you should. Look at the front page and call the area or state director for your area and ask what doctors they would recommend. The BEB Board list would be good also, but personal experience is best. Start keeping a simple diary and some pics for the next doc visit. By the way, if Botox is done right, your eyes still blink and close. Sometimes a shot is a little off and you get ptosis, or as I do, an eye that does not close good. Botox is not static for the entire time. Its effect build up and then start to recede. It varies, but my ptosis-when I get it-lasts about a month. It is a small price to pay for the other good. Botox is somewhat a learn by doing process. Doctors are trained to know the muscles and where to place it, but sometimes it is a little off and adjustments have to be made the next time. I am afraid to say it (I'm knocking on wood) but the Botox I got about 10 days ago is working the best yet and it has been about a 2 year trial and error. One time he adds a little to one spot and takes away from another, etc. I do not get stiff brows and you still blink. I feel more normal than without because the spasms are relieved. Modified by bluebird at Thu, Aug 07, 2008, 08:49:03 |
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Posted by: Claire from Canada ® 08/07/2008, 10:38:20 |
Hi Guy, I thought of 2 things that could be helpful for you to know:
- when I am doing the talking and when I'm psyched (or 'wired', as the famous Dr Anderson called it when I mentioned this to him), my eyes are open and there are no spams. So, when I did not realize this at the beginning of developing BEB in 2001, I saw doctors and explained what was happening and we discussed what it could be and my eyes were open (I was doing the talking), and some doctors told me that my problem was in my head basically (which it is, actually!) since they could not see it. Of course, BEB, Meige, and all its friends, are different for everyone. My BEB and Meige got worst over the first 2 years, and have somewhat stabilized since, 'somewhat' being the key word. Good luck to you. It's not fun, but it's manageable. My main advice to you, whatever happens in your BEB journey: just try to keep your life going as normally as possible. I have BEB; it does not have me. I have a child, a husband, make that 2 kids, a great career, and I take university classes, and go for power walks everyday, I love social events, etc... If I listened to myself sometimes, I would stop it all and just stay home. I will not be listening to myself; life is so worth it and so short. Claire from Canada
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