Posted by: June in Toronto ®
01/31/2003, 11:24:08
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Hi Sherrie. I had a film put on my windows to soften the glare (we get all the afternoon sun in an 18th-floor apartment) - it helps. I also take Bilberry tincture (a herb) for light sensitivity, but it takes a year or two to get right into your system before it really helps (I did this through a Naturopath).I'm sure Kelly will post back to you about your teeth clenching as she experiences that and uses a dental-made night guard to help with it. Clenching the teeth and making noises seems to be part of dystonia - the noise-making seems to be a tactic we use to help us keep our eyes open (if possible). Some of us hum a lot, sing, whistle, whatever it takes. Keep asking questions and we'll keep trying to help. Best wishes June in Toronto (beb/meige 8 years)
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Posted by: Virginia ®
01/31/2003, 14:50:37
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The surgery will remove the muscles that cause the squeezing. It will not help the photophobia or the dryness - in fact, it may make dryness worse. Frequently botox or surgery will cause lagophthalmos (first chance to use that word since I learned it here - it's poor closure of upper eyelids). During sleep, your eyes can really dry out if they don't close completely, so some of us cover our eyes overnight with sleep masks or plastic wrap after putting in the ointment. Some of us also have had our puncta plugged or cauterized to keep in moisture. Both of these tactics help, but won't completely solve the problem. According to my ophthalmologist, dry eyes are more photophobic, so keeping them moisturized should help some. I wear wrap-around sunglasses over my prescription sunglasses. It's not pretty, but it does help.I also clench my teeth. Yes, it is part of the dystonia. I (like Kelly and probably others on the BB) wear a bite guard when I sleep and sometimes during the day when I am having a particularly rough time. I also get botox in my jaws, but if botox doesn't work for you ,that may not be an option. For some reason, I don't seem to make the noises that others have said they do. I do find that deep breathing helps, but you have to concentrate and keep at it. Didn't mean to ramble. Virginia in AL, with my 2 cents worth and no weather report
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Posted by: Sherrie Feltz ®
01/31/2003, 23:25:44
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When my symptoms first began I went to an opthamologist thinking it had to be just something with the eyes that could be fixed. I was diagnosed with the dry eyes and plugs were put in---3 times, they kept working their way out within a couple of weeks. I guess the cauterization may be the next step after the myectomy. My noises and humming( no particular tune,something that just comes out) is sometimes embarrassing. I don't realize that I'm doing it, my other half makes fun of me...sometimes he's just so understanding.HA If I'm out in public,which isn't very often, I have a real hard time and the noises and humming gets worse. All of a sudden I realize that people are watching me, sometimes they come up and ask if I need help. My daughter(will be 8 on the 11th) is great...she will take my hand and tell me to just relax mom, I'll get you there..a few times she's run me into things. She also will quietly let me know when I'm humming.
As for the bite guard, I had one several years ago, I had TMJ and had to wear the guard until the surgery was performed. I did start wearing it at night again until Steve came home one day and plopped his heavy duffle bag down right on it and it snapped in half. Now I'm rambling...sorry.....it's getting late and my eyes,body and brain are going buggy.Sherrie
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Posted by: Ann Doyle ®
02/01/2003, 13:31:52
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I'm not a DR. but I play one on the internet. Benadryl helped with the light sensitivity but don't drive or use a power tool because it will make you sleepy.
Which reminds me and this is apropos of nothing. On TV there is a commercial for Ambien. It's a sleeping pill. One of the side effects according to the commercial is that it might make you sleepy
And that is like coaches being interviewed that say--We came to play. Ann Doyle
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Posted by: Sherrie Feltz ®
02/01/2003, 19:11:30
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Ann....about the commercial...I guess I never really paid any attention, but there are several out there that are rather goofy if you think about them. Now you know that if that side effect weren"t there, someone would have a suite against the company. I myself would hope that a sleeping pill would make me sleepy,how about you?
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Posted by: Sherrie Feltz ®
02/01/2003, 19:21:12
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I've used the Benadryl, but my eyes are so dry and irritated that the Benadryl's "side effect" of drying out the eyes just makes my situation all the worse. Maybe if I get the cauterization to help keep the moisture in the eyes then the Benadryl will help. Thanks for the suggestion, I'll keep it in mind for the future.Sherrie
I'm beginning to look like a real dimwit trying to post messages here. My danged computer has been shutting down on me lately. Just as I'm posting it will disconnect and out of total frustration I don't see what I thought I'd posted so I re-do it and low and behold there it is twice. Sorry --modified by Sherrie Feltz at Sat, Feb 01, 2003, 19:39:38
Modified by at Sat, Feb 01, 2003, 19:39:38
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Posted by: Ann Doyle ®
02/03/2003, 12:27:21
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My computer keeps telling me that I'm doing something illegal. If I was, shouldn't I be having fun? Ann D.
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Posted by: dorothy long ®
02/04/2003, 10:34:23
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Hi Sherrie, when I had my myectomy Dr Anderson cauterized my tear ducts I do not have dry eyes now. As far as the benadryl when I took it I would sleep for hours, needless to say I don't use it any more.
Good Luck
dorothy long from Pa.
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Posted by: Sherrie Feltz ®
02/04/2003, 11:57:57
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I got a phone call about an hour ago from Dr. Susac's office. Dr. Patrinely had a cancellation for tomorrow afternoon. I jumped on it. I had to do some juggling, but my husband is taking me to my mom's tonight. Mom and I will be leaving her place around 5a.m. to head to his Destin,FL. office for my first visit. I'm really excited,I'm telling everyone that I know. Finally----it's not all in my head and hopefully I can get some relief from the frustration. I have a list of things to discuss with him. Thank you Dorothy for the information about getting the tear ducts done at the same time. I'll post back once I've had my visit. Prayers are welcome. Thanks to everyone on the bb.
Sherrie from Polk City,FL
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Posted by: Sherrie Feltz ®
02/08/2003, 09:13:12
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Hello to all. First of all I really like Dr. Patrinely and his staff. They ll seem so understanding,informative,patient and knowledgeable. I found out that I not only have BEB,but also Meige and Apraxia. Now I know why the Botox hasn't worked for me. He will do my myectomy and cauterize my tearducts on March 10. My next surgery will be to add a "sling", artificial/synthetic muscle to my eyelids so that they will open on their own.(Hopefully). I'm nervous, but like he said,you don't have surgery and holding my eyes open with my hand will be a forever thing, have surgery and get a chance of some relief.95% of the time I am holding the eyelids open,the other 5% I can open little slits. Anyone had the "sling" done? I'm going to get the myectomy video,on loan from the BEBRF. They told me that the swelling will take approx. 3 months to go down. How bad has this been for any of you?
Virginia/AL, you helped me by sharing some of you experience...anything else to add? Anyone had both of these surgeries? Any and all responses to one or both procedures is more than welcome. I'm really excited,yet nervous. And I'm so glad that I'm not a "head case". (Well maybe just a little on some days).
Thanks to all of you for being here and your sharing and caring.
Sherrie/48/FL
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Posted by: dorothy long ®
02/08/2003, 10:51:34
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Hi Sherrie, I am glad you like your new doctor. I had a limited myectomy 5 wks. ago. I did not have any pain it was uncomfortable, but I like you was at a point where I had to. I also had apraxia, which I understand is why our botox won't work. Never a sling, but I'm sure someone will post if they are familair with the procedure. Each day my eyes are a little better, but I can see this is a slow healing process, and if I get good results its all worth it.
The Best of Luck
Dorothy Long from Pa. snow everywhere
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Posted by: Virginia ®
02/08/2003, 11:14:11
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I share your opinion of Dr. Patrinely and his staff. I only had the limited myectomy, not a sling. I do have apraxia of lid opening, but it wasn't bad enough to do a sling. Whatever he did during the myectomy helped the apraxia. I thought the recovery went really well. The swelling wasn't obvious after the first couple of weeks and the bruising went away pretty quickly, too. I went to Florida one day, had surgery the next, stayed overnight in "extended recovery" and went back to Alabama the next day. I took a cooler with me so I could use ice packs on the way home (about a 7 hour drive). I was driving some within 2 weeks and regularly after a month or so. All this will vary with the individual. I had the stitches taken out locally by my ophthalmologist. Feel free to ask anything you want. Keep us up to date on your surgeries and good luck. I do recommend borrowing the video. It is a few years old and there may be some changes in what he does, but it is definitely worthwhile to know what you are getting into. Virginia in AL
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Posted by: Connie Lee ®
02/09/2003, 15:52:24
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Hi Sherrie.....I do hope and pray your surgery will be 100% success. I'll be anxious to hear on your results. I have had BEB about 4 years....2 of those years they had to decide what my problem was. I have good days and bad just like everyone else. It seems when I watch TV, go to church, and when someone is talking to me - is when the spasms begin intensely. I, too, hold my eyelid up while watchin TV - so, I will be anxiously waiting for your good results report from your myectomy.......which, I, too, am seriously thinking of having.....if my doctor thinks its a need. Hang it there kiddo....you've acquired another friend in Iowa thinking and praying for you.
Connie in Iowa
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Posted by: Sherrie Feltz ®
02/01/2003, 19:28:27
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The Benadryl seems to dry out my already dry and irritated eyes even more. Maybe after the cauterization procedure the Benedryl would be helpful. Thanks for the suggestion I'll keep it in mind for future trial.
Sherrie
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Posted by: Kathy in Oregon ®
02/10/2003, 11:41:29
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when my botox is wearing off and i have to wait for my injections , the tension also settles in my jaw and i think you need to protect your teeth so they don't crack.
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