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Posted by: Peter from Brisbane ® 12/01/2003, 20:40:40 |
Hello Everyone, I keep reading about the clamping shut of the eyelids being the main symptom of BEB. I suffer from this - in varying degrees but it has subsided dramatically since having Botox injections. However, when it is bright outside, and especially when I am driving, my eyelids get very heavy and just want to close - it is like you are very sleepy - even though you are wide awake but just your eyes are very tired. I don't appear tired and my eyes are not red or sore looking. Since the Botox, my eyes do not clamp shut in the glare. I can get around this by talking on the cell phone or by singing along (loudly) to the car stereo. I am getting some FL-41 tinted sunglasses made and hope these will help. I am curious to hear if anyone else suffers from the heavy eyelid symptom as opposed to the clamping shut of the eyelids. Peter |
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Posted by: Cynthia ® 12/02/2003, 07:39:14 |
Peter, you've described very accurately how my eyes act up also. Before I even knew what BEB was I couldn't figure out why my eyes just wanted to go closed when I wasn't really sleepy. I've never had a "clamping" shut, but extremely heavy eyelids. Frustrating! Cynthia in IL |
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Posted by: Linda in Indiana ® 12/02/2003, 10:52:36 |
Hi Peter, Yes I experience that also. I just had my shots 11 days ago and I am doing much better at driving, but before that, for about the last month, when I was driving my vision was like having my eyes crossed. That was the only way I could describe it to my husband. I could see but it was just not right.
If singing helps you then go for it. We all have are coping tools that we use. Besides singing makes you feel good anyway. Linda |
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Posted by: Peter from Brisbane ® 12/02/2003, 15:56:58 |
Thanks Linda, You obviously never heard me sing before!!!
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Posted by: cklw ® 12/02/2003, 13:33:44 |
Peter - I've been experiencing the heavy eyelid thing lately too. I was lucky enouogh to get botox before BEB got bad, I was diagnosed quickly and then treated (they had diagnosed my oromandibular and then when I went in for the botox for the omd the eye thing started so he just went ahead and treated that). However, it's now been a month since I got the botox and my eyelids have started this heavy thing. Sometimes I also get a very bad headache right behind my eyes to accompany the heavy lids. I don't know if headaches are supposed to be a part of this, but lately I've had some doozies and they always seem to accompany the heavy eyelid thing. I'm glad to hear it's not just me. I am going to see a new movement specialist in a couple of weeks and want to bring experiences that others are having that are the same as mine. This really helps me know I'm not alone! Thanks. CKLW |
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Posted by: Jenny Mancer ® 12/02/2003, 13:39:14 |
Hi Everyone. Yes I too have the very heavy eyelids and sometimes I have wondered if I have BEB. I blink alot sometimes aswell. Watching tv and driving is when my eyes are so heavy I just can't keep them open unless I hold them up. I have had this for 16yrs now and frustrating......it is.
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Posted by: Peter from Brisbane ® 12/02/2003, 16:03:35 |
Jenny, You have just described the symptoms I have. I think you should try and find an Opthomologist or a Neuro-Opthamoligist ASAP. As soon as I found one here who knew about BEB, he started me on the Botox and it improved things dramatically. If you can't find one locally, let me know and I will make some enquires with the Opthamologist here and see if he has a contact in NZ who can help you. ...Sorry about the World Cup.
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Posted by: Barbara ® 12/02/2003, 16:25:44 |
If you continue to get eyelid closure and the botox doesn't seem to help you may have apraxia of the eyelids. But even before I got apraxia I always had difficulty driving. Driving is such a necessity in life. Asking people to take us to doctors all the time gets to be humiliating. At least it was for me. |
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Posted by: Jenny Mancer ® 12/02/2003, 21:59:53 |
Hi Peter.
Thankyou for your offer of help....very kind of you but I just realised that I made it sound like I don't get Botox..I do and have for along time now but it doesn't have much effect anymore and I have been given 220U of Dysport in lots of different sites around my eyes and this has helped alot. It has lasted 6wks and is now wearing off and the heavy, burning eyes are coming back. My Dr and I have agreed that we may be coming to the end of the line here as the Government funding doesn't allow for me to carry on with this treatment when it has little effect. 100 Units of Botox does nothing for me and that is the max we can have over here. When I said I wonder if I have BEB I ment 'I wonder if I was misdiagnosed' I was first told I have Myesthenis Gravis as has alot of us have been told this. But anyway congrats about the cup........shame bout the tennis  Have a great day and thax for caring |
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Posted by: Peter from Brisbane ® 12/03/2003, 17:34:06 |
Hello Jenny, Yes I did misunderstand you. I was also misdiagnosed with Myesthenia Gravis, sinus problems, dry eyes -etc etc for about 9 months, and I know how frustrating it is. My own doctor told me I should consider seeing a shrink about this too!!!! Although I am not happy that I have BEB, at least now I know what it is and I can get on with my life. Anyway I am very happy to be part of this group - all the members really care for each other. Peter Modified by Peter from Brisbane at Wed, Dec 03, 2003, 18:05:46 |
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Posted by: Delaine Inman TN State Coordinator ® 12/02/2003, 16:38:53 |
What you describe sounds very familar. If I'm not talking or singing my eyes want to close as soon as I get in a vehicle to ride or drive. It takes a lot of energy and focus to keep them open. The Botox does help them not squeeze tightly. Once again you are not alone or nuts! It happens to me walking down long hallways in bright lights or in sunlight as well. The medications help me watch TV and look at the computer screen much better. |
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Posted by: Junebug ® 12/02/2003, 16:57:54 |
Oh Yes. In fact I had this problem before my eyes started spasming completely shut and I knew what Blepharospasms were. I just can't drive by myself any more. :o( This is even with the Botox holding them most of the time. Best wishes. |
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Posted by: Kathy in Atlanta ® 12/03/2003, 08:10:48 |
peter, when i used to drive, singing loudly to the radio did also work for me. As we previously discussed, I'm one of those whose eyes stay open when they talk. So i can't help but feel there is a correlation between the eyes and the vocal part. A sort of "kicking in" of another backup sense. However this is exhausting to do all the time. |
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Posted by: cklw ® 12/03/2003, 09:47:20 |
Kathy, I know what you mean about exhausting to do all of the time. I have been seen a speech pathologist about my spasmodic dystonia, I can usually sing or speak from a high part of my throat, this causes me to hold my eyes open wide. I just don't always feel like doing this... and I guess it's because it's too tiring. My sister asked why I don't just hold my hand on my face so my lips don't go crooked and my right eye stays open. I told her it's just too much effort sometimes... more than just letting my lips stay where they are! I thought I was a little nuts for thinking this was exhausting, but it really is isn't it? Glad to know you feel this way too! (well, not glad for you that you feel that way, but again to know I'm not crazy!)... CKLW |
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Posted by: Kathy in Atlanta ® 12/05/2003, 10:54:18 |
Yes the exhaustion aspect of beb and other dystonias does need to be more empthasized, I think. Muscle spasms Are exhausting as well as not being able to control a body part. Several newsletters ago, a man did describe this part of our disorders.
And holding your hand or arm up for extended period of time is NOT a natural body position! |
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Posted by: Peter from Brisbane ® 12/07/2003, 16:19:16 |
Hi Kathy, In my case, I would definitely say that the heavy eyelids are not a result of muscle exhaustion. I am 99% certain that my eyes do not spasm when I am sleep. If I wake up and stay in the house all day, I do not get the heavy eyelid thing, If I wake up and go straight into the car, I immediately suffer from the heavy eyelids- but only in daylight. So it is the glare that is the main cause of the problem but driving is the clincher. Peter Modified by Peter from Brisbane at Tue, Dec 09, 2003, 23:41:07 |
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Posted by: Peter from Brisbane ® 12/03/2003, 17:28:58 |
Hi Kathy, I also found that if I pinch my earlobe really hard, that will "snap me out of it" too. However, you don't want to do this too often because it really hurts and you will end with a purple ear lobe. Peter
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Posted by: Kathy in Atlanta ® 12/05/2003, 10:58:02 |
Sometimes if i pinch my right nostril shut and breathe outward , this will also do it. Goes back to a broken nose. this only goes to show how different we all are. |
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Posted by: Lynn Yarbrough ® 12/03/2003, 23:43:28 |
I, like most blephros, have experienced the squeezing around my eyelids (for many years). While I accept that this is caused by malfunctions in the 7th cranial nerve, I also believe that there is an element of self-limiting effects from the blinking. I have explained here before my theory that most of the problems we have with photophobia are the result of our irises staying open longer than normal and therefore exposing the retina to harmful UV radiation -- which, ultimately, is painful and forces us to close our eyes, which in turn lets our irises open -- and around we go. The result is, I believe, that our lids slowly revert to a sheltering state of semi-closure to protect the irises and thus the retinas. What singing, near-miss accidents, and several other things do is to cause an adrenaline rush, which opens the eyes fully -- for a short time, after which we revert back to the droopy-eyed state. At least that's the way it appears to me. --- Lynn |
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Posted by: Kathy in Atlanta ® 12/05/2003, 11:00:46 |
Maybe we should create a group called " the Singing Blephros". Do they have audio on chat rooms yet? |
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Posted by: Cynthia ® 12/05/2003, 11:09:47 |
That would be waaaaaaaay cool! :-) |
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Posted by: cklw ® 12/05/2003, 17:48:36 |
actually my family and friends say my singing voice has gotten better since i developed spasmodic dystonia! So singing has become more fun, cause not everyone asks me to shut up any more! CKLW |
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Posted by: Kathy in Atlanta ® 12/07/2003, 07:41:03 |
Well think about it. It is somewhat like taking voice lessons. You are stretching your vocal cords. I noticed also that my range improved. Of course that was years ago. |
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Posted by: Debbie ® 12/05/2003, 17:44:26 |
Dear Peter,
I read all of the replies to your post and noticed that nobody mentioned my coping mechanisms: humming
(all of the above while driving....and of course, I sing too, but not with the radio--I have my own repertory)
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Posted by: Lynn Yarbrough ® 12/05/2003, 20:37:05 |
Yes, all those things, plus simply touching various parts of your face, are helpful to a small population of Blefros. Almost anything involving the face and head has some effect. So don't feel out of place! --- Lynn |
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Posted by: Sally in Idaho ® 12/06/2003, 22:40:54 |
Hi Peter ~ I experience that feeling also and drive with a definite squint. I only drive in very familiar territory and am exhausted after a few hours of off and on driving and doing my errands or whatever. Even sun glasses don't eliminate the problem. Sally in Idaho |
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