Posted by: ClaireW ®
01/28/2003, 10:59:55
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Yup...walking makes mine close too!Like my son once said to a shopkeeper.."my Mum's not drunk...it's just the way she walks!" And yes, I get run out of things to say to people about it..or the energy to even bother! I just can't see how someone can begin to understand the oddities of this bleph. until they have experienced it themselves...that's why this board is so good!
Greetings from Macclesfield
Claire
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Posted by: Rita Molnar ®
01/28/2003, 11:15:02
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Hi Jackie..."Not being able to keep eyes open while we're walking..." --that's why I'm always bumping into walls. It's the stangest thing, isn't it???--motion seems to do that to many (maybe all) of us. I've read the same complaint a number of times, and I experience the same thing myself. My Botox injections work for 2 to 2-1/2 months, the same as yours, and I receive them on a 3-month cycle, just as you do. My overall experiences sound very much like yours, but I have Meige as well as BEB. During one cycle, my Botox was totally ineffective for the entire 3 months, but I was able to attribute that to a double-dose of stress during that time. Also, once when my doctor changed the injection site to help my Meige, I had unpleasant side effects which altered my smile and the way I spoke and ate. Currently, I'm a little over one week beyond my scheduled Botox injections, but I'm doing quite well because of blepharoplasty surgery on the 13th, which seems to help me to keep my eyes open a little more. Fine-tuning the Botox injections is not an easy thing, and I guess it takes a lot of trial and error. I've noticed also that my eyes close while I'm a passenger in a vehicle. As the road is "coming up"....my eyes will close, much like a flinch, and I can't do anything to control it. It feels somewhat like an adrenaline surge--like motion is falsely representing danger or something uncontrollable, and so I react accordingly by closing my eyes. Sometimes in this situation I keep my eyes closed for several seconds, then take several deep breaths before I open them up again. Helps short-term...but the blinking does eventually start up again. When I'm at the point between Botox injections where my eyes are closing while I'm walking, I deliberately slow down my pace a lot, and that seems to help just a little bit for the moment. I've resorted to wearing sunglasses a lot more, in an attempt to hide my closed eyes in order to avoid having people tell me to "wake up"...(yes, I've heard that remark MANY times). But aside from that, I've found nothing more that seems to be able to help, except relaxation, which is not always practical or even possible. Perhaps some form of relaxation exercises (tapes, self-hypnosis, etc) would be helpful to you overall, and might serve to magnify the effect of the Botox for you over a longer period of time. I suggest this only because we know for certain that stress adversely effects BEB, and, substitute teaching certainly sounds stressful to me. Wish I had more to offer.... Best wishes to you... Rita in New Jersey
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Posted by: Lynn Yarbrough ®
01/28/2003, 11:16:42
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Hi, Jackie,Maybe this will make you feel better, maybe not ... anyhow, I (when I'm off my Botox) have a LOT of trouble with stairs. When I arrive at the top of a down flight, my eyes SHUT and I have to hang on the handrail for dear life. The first awareness that I had of BEB was when bowling. I would pick up my ball, step to the line -- and my eyes would shut down for no apparent reason. And stay shut for a while. Yeah, the bright lights, performance stress, nerves, the whole bit. Eventually I gave up bowling entirely. Thank you, Dr. SCott, for figuring out that Botox would help. --- Lynn
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Posted by: ClaireW ®
01/28/2003, 12:11:32
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Aren't we all so different...yet so much the same...bowling is one activity that I can do...my eyes open...but close as soon as my turn has finished!
Best wishes,
claire
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Posted by: Raymond C. Fudge ®
01/28/2003, 12:34:06
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I have the same problem of walking and my eyes going shut. I run / bump into walls. So far I have not hurt myself. I ordered a stack of the yellow BEB trifold to hand out to those that do not seem to understand. I almost always have one on me or close at hand. Official information seems to go over much better than what some consider, sysmpathy complaining. As you can tell I am having trouble with my wpelling here as I can not watch the screen as I type. I have to hold one eye open to see much of anything and both to really read my sceen.I am to have surgery, Dr. Patrinely in Pensacola, the 26th of Fefuruary. I hope it will get me through a few more years of work. I need only one more to be vested for retirement. Do order some of the pamphlets and carry them with you to hand out when you feel the need. I carry some to church in my inside pocket of my sport jacket and have given out several now. Best of luck.
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Posted by: gayle register ®
01/31/2003, 08:18:07
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Please let me know about your surgery in Pensacola. Pensacola is a lot closer to me than Utah. I shall wait patiently for your response and you will be in my thoughts and prayers that everything goes well. Gayle in GA
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Posted by: Sherrie Feltz ®
01/31/2003, 08:37:47
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I am to see your Dr. P in Pensacola soon. How far advanced is your case of beb? 95% of the time my eyes are shut. My neurologist in Winter Haven,FL says it's the worst case that he has seen. Am I the only one that can't stand the frustration of the eyes being shut? I hold mine open....looks pretty dumb, but I have a family to take care of and I live 10 miles from the nearest (small town). Buses and taxis are not an option (there are none out here) so I have to drive. Look out all of you that are on the road in my area.
Good Luck Raymond....thoughts and prayers are with you.
Sherrie
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Posted by: Jackie Dewey ®
01/31/2003, 08:55:56
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There have been stories of people who use tape to hold their eyes open to drive. About 10 years ago there was a substitute teacher in our district that scotch taped her eyes open all the time. At the time I thought it was really strange but now I realize what she must have been experiencing. She has since passed away.
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Posted by: Sherrie Feltz ®
01/31/2003, 22:29:26
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Out of desperation I tried the tape. It seemed to work pretty well as long as I got it positioned right. I only used that method of madness a couple of times...you see, it hurt like H... when I removed it. The removal left my eyelids so raw that I couldn't even touch the lids to hold them open for a few days. The crazy things we do out of desperation,huh?Sherrie --modified by Sherrie Feltz at Fri, Jan 31, 2003, 22:29:57
Modified by at Fri, Jan 31, 2003, 22:29:58
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Posted by: June in Toronto ®
02/01/2003, 09:41:08
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There may be a better tape, Sherrie. for you to use. Did you get a sensitive-type tape - I've heard of people (don't know them) that use a tape to keep their eyes open constantly without much difficulty? The English designed an eye prop (a miniture washing-line prop!) and Shirley once showed a photo of eye glasses that had a contraption attached to help keep the eyes open (if I remember correctly). Keep working at the problem.June in Toronto
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Posted by: Kelly Saffell ®
01/28/2003, 16:35:39
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My eyes close alot when I walk too. I am always bumping into things around the house and ran smooth over my youngest in the kitchen the other day. The worst was a couple of weeks ago when I ran into my bedpost HARD. When I go for a walk outside with the kids, I have to keep my head down and look at the ground. Then I can open them a little bit. Last time I was holding on to Cory's shirt and she made me change places with her so that I was on the inside of the sidewalk because she was afraid I would bump into a brick mailbox. My 4 year old is such a "mother hen."
Kelly in Dallas
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Posted by: Ann Doyle ®
01/28/2003, 17:02:13
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That's really sweet, Kelly. Some people just seem to be born wirh a special gift.
I work in a hospital and the parking garage joins it with a 1/4 mile enclosure with overhead flourescent lighting. Even with my specially coated glasses and ski glasses over them, I have problems. I walk with the back of my wrist against the wall but still have to stop sometimes. People always ask;" Are you all right?" I think it is the hospital setting. At home, I just bounce off the walls. Ann Doyle
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Posted by: Cynthia ®
01/28/2003, 17:24:37
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Walking can be dangerous even in your own home. My husband and I collided one day as we were both rounding a corner in the hallway. His shoulder crashed into my eye and left it black and blue. I don't know if people believed that really happened or not :-)) We're heading to FL next week but the 50s in CO doesn't sound bad either, Jackie. Cynthia in IL where it is snowing tonight and the wind chill yesterday was way below zero - brrrrr
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Posted by: Delaine Inman ®
01/28/2003, 20:31:26
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Motion definitely set me off: walking, riding, driving are the worst. TV, Movies, Computer if there is a lot of motion or flashing lights. Add light to any those things and it doubles the trouble. The Blind with perfect vision handouts are very good.
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Posted by: Jackie Dewey ®
01/30/2003, 00:34:16
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Thanks to all of you for your input. I know that when it is time for my next injections I will go to the doctor with much more information than I have had in the past.
Jackie -- who subbed for 6th graders today and will have 8th graders tomorrow ;-)
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Posted by: Barbara Molnar ®
01/30/2003, 13:06:07
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Jackie,I'm fairly new to the bulletin board so I'm not quite sure how it works yet but I saw your email and I also have problems walking. My goodness you can't imagine how many walls and closet doors I've banged into. My eyes tend to close whenever and wherever they feel like. Sometimes when I'm driving but not for long thank goodness. I've even fallen over my dog in the house and outside when I take him for a walk. I've also tripped over the sidewalk twice because I'm a walker and refuse to give up. I've almost broken my jaw and teeth and have broken my glasses twice. I have tinted lenses but wear sunglasses a lot because the sun bothers me. You are not alone, as you cansee there are many of us. I haven't gone to the doctor yet and have had this for 5 years but I'm planning to go to the doctor soon for the Botox shots (hope they help). So far I've been managing with the help of my husband, friends and family. Good luck, Barbara
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Posted by: Sherrie Feltz ®
01/30/2003, 13:36:14
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I also am new to this site and am so thankful to find others with similar symptoms. My case in the beginning was for my eyes to close while walking or driving for short periods. Now 1 1/2 yrs. later it has advanced to where I have to hold them open with my hand to function at all. Now and then if I look down I can see through little squinty slits. The progression has been very frustrating. Mine is so severe that Botox didn't work at all. I had many doctors tell me that it was psychological. Finally about 3 months ago I found a doctor that put a name to it. He has done some research and found a doctor that deals mainly in Dystonia patients and performs the myectomy. Can anyone share with me their experience with this surgery? I'd love to be able to ride bikes and play ball with my kids again.....you all know....live a half way normal life again. I haven't even been able to substitute teach since last school year. Good luck Barbara..if you're not closing all the time,your chances with Botox are great.
Sherrie
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Posted by: Barbara Molnar ®
02/02/2003, 14:29:17
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Sherrie,I wish you the best of luck. In a few weeks I'm going to a doctor to see if I can get the botox shots. I've had this 5 years and it's gotten worse but not to the point where I can't function at all. I've noticed that if I stay calm it's not as bad and I've decided not to think about it as much. Good luck Barbara
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Posted by: pippa from scotland ®
01/31/2003, 06:37:20
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Yes, Jackie, I too have great difficulty walking. I am o.k in my bown home and garden but when I go into town I need someone with me all the time as my eyes are either completely closed for most of the time or I can only see from tiny slits at the bottom...so I walk with my nose in the air. "Mrs Snoots" my brother teases!
I am also still aware that so many of us, including me, seem to have worked/work in a school environment.....
Pippa from Scotland...who is worried that war is going to break out while I am travelling to New Zealand, via Singapore next week. This is not helping my stress levels!! Is nobody else concerned about the war?
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Posted by: marion C ®
02/01/2003, 00:40:44
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After 10 years of BEB (and aparaxia) and a pretty successful limited myectomy, walking is still one of the more difficult things for me. However, since the limted myectomy I can walk with my eyes open, I can see down a street when i walk and I no longer bump into walls etc, which I used to do even just around the house. I also work (at a desk/policy job) without any real difficulty any more. Sometimes with the right help you can change things for the better.
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Posted by: Jeannie Day ®
02/01/2003, 21:50:40
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The worst time for me is when the Benadryl is wearing off. Sometimes I don't notice that it is time for another dose of Benadryl until I walk down the hall in my school and realize I can't look at anyone. My head is bobbing; my eyes are blinking; my face is contorting, and I'm hoping that no one is watching me. Jeannie from Ohio
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Posted by: Kathy in Oregon ®
02/03/2003, 07:48:39
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Jackie, my eyes also react to different things when my botox is wearing off or kicking in. Light and temperature changes. When i walk outside, also the wind and cold make this often difficult to go any disatance.
Yes, i do think that the longer you have to wait is reflected in the next injection time and feel there should not be such a wait to get these injections when it truly starts to wear off . Everything becomes a major endurance test, which I feel is an addtional and unnecessary burden for those with beb! i am also getting my injections in the eyelids; the doctor does do a good job of giving these, but i am also noticing changes with this.
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