Posted by: ClaireW ®
01/20/2003, 14:03:38
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Me..I'm at the beginning..and although I know this is probably an unending path, I am glad of the torches placed along the path for me to see a bit more clearly by....torches placed by the wonderful people here on this board!
Claire
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Posted by: MaryNY ®
01/20/2003, 20:14:32
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Judy-Tonight I'm in the State of Frustration! The weather forecast has forced me to cancel my appt. for Botox tomorrow, three hours north into the "snow belt" of MY State. If I can keep my shots exactly 8 weeks apart, I am pretty well maintained. I schedule them out as far as I can, and it's hard to get one on short notice, so this will throw my whole schedule off. They're going to call me with a new date, and I can only hope! Otherwise, I am doing OK....getting used to pacing myself, which of course is very important, but I'm bluffing a lot of the time! I'm not so bad that my family and friends talk about BEB all the time, but I try to keep a straight face (pun intended!) and my condition is seldom mentioned, although people are very nice about it, and do ask occasionally how I'm doing. If I go past 8 weeks, the symptoms really kick in. Mary
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Posted by: Jackie Dewey ®
01/21/2003, 01:09:36
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I can relate to having to postpone an appointment as special as botox injections. I was having mine every 3 months but there was a storm in Denver the last time I was scheduled. I had to wait a month before it could be rescheduled. I really noticed the difference. It has been interesting to discover that many who receive botox get them less than three months. Mine starts wearing off at 2 months even though the injections are scheduled for 3 months. I will have to discuss this with my neurologist at my next appointment. Hope you don't have to wait too long for the re-scheduled appt.
Jackie
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Posted by: Delaine Inman ®
01/21/2003, 09:13:51
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I've beeb dealing with symptoms for 4 years. I was at my worst from May 1999 until May 2000. I still can't work, but the past 2 years have been easier than the first 2. I believe I am going to continue to improve. I have a good doctor and I continue to focus on just trying to be as healthy as possible. I get 32 units of Botox around eyes every 3 months until this last time it was 2 because that seems to be when the left eye gets worse. I take Klonopin 1/4mg 4 to 5 times a day, and I just started Benadryl 25mg 3 times a day and Piracetam 800mg 3 times a day. I try to do relaxation and stretches and exercise and eat healthy and get plenty of rest. I take a multivitamin for Women and another for Fibromyalgia.
--modified by Delaine Inman at Tue, Jan 21, 2003, 09:20:47
Modified by at Tue, Jan 21, 2003, 09:20:48
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Posted by: joyce whitt/NC ®
01/21/2003, 10:18:12
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I saw a doctor who put a name to this condition in 1998 after at least 1 1/2 years of searching for a doctor to tell me what I had. I have had 3 surgeries the last one being with Dr. Anderson Jan 7th. The reason Botox did not work for me is because I do have apraxia. When they were testing me at Dr. Anderson's office they told me to squeeze my eyes closed as hard as I could then he told me to open them. I told him we would have to wait awhile because they open when thet wanted to open. My eyes are wide open at this time BUT because of the spasms under my eyes I am still having trouble keeping them open. He did cut out some squeezing muscle under 1/2 of my eyelid but the area next to my nose still scrunches up. How soon after surgery can I get Botox in the lower lids? 6 weeks? He told me if the Botox did not work for me I could come back in 6 months and have the lower muscles stripped. I will have to pray and think about that. It takes time to heal and I am impatient for everything to heal up. Where am I on this road - just trying to get through each day with the help of God and my friends. Joyce in NC where it was 60 degrees yesterday and today It is in the low 30's with light freezing rain this afternoon and evening and possibly snow Wednesday night into Thursday. No wonder I can't get rid of this cold I have had since before my surgery. I thank God for this BB for I have vented my frustrations many a time and everone is always so comforting. I just want to get to the stage where I can comfort others also.
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Posted by: Sandy Chupick ®
01/23/2003, 11:56:21
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I noticed someone said that they get Botox shots every 8 weeks. My doctors say they can not do them that often because the manufacturer states that 3 month intervals are necessary. I too start to go down hill 6 to 8 weeks after the shots. This has been my pattern since Oct, 1998 when I first started to get the shots. I am so thankful that I get relief with the shots, but sometimes I feel like I am on a teether (spring) and I get seo fare and then I am pulled back into my limitations. Does anyone have suggestions how to deal with the frustrations. I do have great strength and belief in the Lord and that helps tremendously, but sometimes I feel like I am in a black hole all by myself. Has anyone ever had an occupational therapist help them learn to live more independently. Tonight we are going out with four other couples to a dinner and a dance. Social situations are so hard for me because I was always such a people person and I just kind of sit and hear everything that is going on. It is very tiring for me. Thanks for listening to me.
Sandy
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Posted by: ClaireW ®
01/23/2003, 12:58:20
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Hi Sandy, You could have been writing for me with what you said!
I have the same problem with social situations and dinner dances can be the worst..all that conversation, lights...my eyes just close. One activity i have found that I can do socially is bowling...my eyes open as soon as I pick the ball up...shut the rest of the time..but that's fine! It has been a great source of fun for me!
I had an occupational therapist...still have..but in the end most of what she could show me practically i had already worked out for myself,(pacing myself,postitioning of things, talking books(YAWN), voice input software for computer etc.etc, however what I did find invaluable was her patient listening ear knowing that she really understood how difficult things could get at times..she provided the real understaning that my (Male) neuro was never going to have. That really helped me. She understood that awful tiredness that we get. I think she took away a lot of the guilt I felt about saying "I am too tired"..so yes if you can find a good OT then go for it!
Best Wishes,
Claire
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Posted by: Linda IN CA ®
01/25/2003, 19:59:16
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I was relieved to hear someone else mention the feeling of tiredness that goes with the struggle to keep on keepin' on. So many of my coworkers know that I have "a problem", but no idea of how exhausting and challenging it is.
I recently had a friend ask if I would go play racket ball with her and another friend. The very idea of me in an enclosed area with two other people, with rackets, and a very hard bouncing ball - AND ME - not being able to see when I start to move almost mde me hysterical. Even if I enjoyed being like a giant movig obstacle on the racketball court, after work,most of the time, I have only enough enregy to get home, eat, and crawl to my couch. Being able to see better after the Botox does decrease some of the exhaustion.
Linda in CA wistfully remembering the days when I could run circles around everyone.
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Posted by: Ann Doyle ®
01/23/2003, 13:03:19
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Like you,Sandy, my doctor only wants to give them every 3 months but after 6 weeks, I spend most of my time in bed so I started making my appointments every 10 weeks. I've done that 4 times in a row now and he hasn't noticed. My second insurance won't pick up the difference so every other time I have to pay $200. Ann Doyle
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Posted by: joyce whitt/NC ®
01/24/2003, 11:06:55
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Sandy, You are not in that black hole by yourself, We all have been there and sometimes it takes a while to get out. Keep trying to live your life as normal as you can. Never give up. If you give up you might be in that hole for a much long time. I don't have much of a social life, mine is centered around the church and there have been times I didn't want to go because I felt so bad. I have had to force myself to go but everytime I went I was glad I made that extra effort. Our church is a caring church and I have a close circle of friends that understand my situation and pray for me.Joyce in freezing NC - it was 6 degrees last night not counting the chill factor.
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Posted by: Rita Molnar ®
01/25/2003, 20:25:12
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Sandy...Your note brought tears to my eyes, because I share these same frustrations with you. Having problems like this..all of us are searching to find the person we used to be. With me, it's almost like a grieving process--I'm so sad that the person I was, and who I liked so much, is gone, and I may never get her back. I used to be in the front of everything...I led and people followed me...I got there faster, did things better, and there wasn't anything that I couldn't do...and that wasn't even so long ago. Blepharospasm and Meige have taken that away from me, and it's a bitter pill to swallow. Now I dread being out among people, I'm frustrated when my Botox begins to wear off, and I'm exhausted at the end of every day from fighting this thing. I'm looking for answers just as I believe we all are. Maybe the answer lies in putting aside what we WERE...in trying to re-assess ourselves for this time and place--looking at what we have now, instead of what we've lost--finding out what we have left that still works for us, and then building on that so that we can begin to enjoy life again. I only know that life can be so enjoyable, and we need to keep looking for ways to make it that way. Heck, maybe next week we'll be hearing on TV that a magic cure has been found for all dystonias....
It's a real battle, isn't it? Please hold on tight to the thought that you are NOT alone...and that others out there are really searching for answers to this thing. And, when you get to feeling like you're in that black hole, just reach out your hand for mine, because I'm there with you.... Hugs...Rita in New Jersey
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Posted by: Evelyn ®
01/26/2003, 20:59:20
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Hi Rita,
Even though I don't have BEB, your post sounds so much like me on the days I'm feeling down. Then I try to remember the things I still CAN DO. It helps to look at life from that angle. I've never been in the best of health, since I became insulin dependent at age 10, but I could still do many things that are considered "normal". As my retinopathy got worse along with neuropathy, life was harder but not hopeless. Then I lost the vision in my left eye. My right eye began to deteriorate also. Then there was loss of hearing in just one day in the left ear, then loss of hearing completely in one day a year later. I'm blessed by new technology, because I received a Cochlear implant six months later. Three and a half years ago I had a stroke. probably brought on by low blood sugar. I have since gotten an insulin pump that has helped tremendously with balancing my blood glucose level. I've been to legally blind and back, had my left eye partially removed, have gotten a prosthesis and still struggle with medical problems. Now I have a cold that I know will soon pass, but overall, life can still be beautiful. I have a nice, warm home, plenty to eat, a great hubby (who is doing better after his bout with Bell's Palsy), and now I'm waiting for him to feel good again:)
Evelyn in rainy but warmer than a lot of places, WA
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Posted by: joyce whitt/NC ®
01/27/2003, 10:32:03
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Evelyn, there is a saying, "don't judge another person until you walk in thier shoes" Or something to that effect. You have come throught many battles, and I admire you for your sweet attitute. I can't handle my own battles but I do admire the fact that you come through bravely. I would not want to walk in your shoes, I am doing all I can to handle this BEB, I would not be able to handle all the many things you have been through. You have something going for you - your husband's love and understanding. If we have that one person who loves us like we are we can better handle this problem. "Problem" covers a multitude of things. Just trying to function each day, and try to at least do a few things so we can feel useful. I am with your Rita, I want my old self back, but it is not to be. As if my eyes weren't blurry enough, right now I am trying to type through my tears - why am I so weepy today. Someone once said, "that tears cleanse the soul" well my soul is being washed real good today. I better quit before I get everyone depressed . Joyce in NC where we were suppose to get snow today but we didn't - darn!! Well if you don't like the weather in NC - just wait a minute - it will change.
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Posted by: Evelyn ®
01/27/2003, 17:52:01
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Hi Joyce, I'm sorry you're having a hard time today. But as the song goes, we will "pick ourselves up, dust ourselves off and start all over again." At least that's what I try to do when I have rough days. Actually, I don't do any of it...God does. I just give Him the "go ahead" by telling Him that I need His help.
I'm doing better today with my cold. I slept well last night except for two or three bad coughing spells. I've had only one coughing spell today. I've been busy washing the bedding to get rid of those nasty cold bugs:)
Evelyn in WA, where the sun is trying to peek out.
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Posted by: joyce whitt/NC ®
01/28/2003, 09:00:45
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Evelyn, you are so sweet and nice. I do look to the Lord for my strength and help in times of trouble - and even in the not so troubles. But once in a while I need to just let go . Sometimes I am not sure how my "wording" sounds to someone else's ears and I meant nothing but compliments to you in my post. You are a dear wonderful person - one day I will get there where. We did a Bible study of the names of the Lord and my favorite was El Shaddai, Sometimes I just have to climb up in His lap and feel His arms of Love around me. Joyce in NC where it is COLD I hope it warms up a bit.
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Posted by: Rita Molnar ®
01/27/2003, 14:23:22
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Evelyn....You are such an inspiration to me! Despite all of your setbacks, you seem to have and know how to appreciate the very best of the most important things in life--things that many of us lose sight of all too often. A million hugs....Rita in New Jersey where the sun is shining today!!!
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Posted by: Evelyn ®
01/27/2003, 17:55:24
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Thank you for the nice thoughts, Rita, but as I just posted to Joyve, I can't do it by myself. My faith is the thing that has brought me this far.
Evelyn
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Posted by: Christine ®
01/27/2003, 17:00:06
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I do admire you Evelyn, you have had to put up with so much. How is your "new" eye feeling? Goodness knows where I am along this path. I'm being treated for Rheumatoid Arthritis now, so I'm hoping that will be under control soon. I've postponed all Botox until I feel I can cope with it again.
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Posted by: Evelyn ®
01/27/2003, 18:06:44
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Hi Christine,
The prosthesis is doing pretty well. I have an appt. on Wed. to get it adjusted. I don't know how they will do that, but I will soon find out. My mother had Rheumatoid Arthritis too. She suffered greatly from it. She took the "gold shots" and used a lot of Prednisone to try to get relief. Hope you will feel better soon.
Evelyn
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Posted by: Rose ®
01/21/2003, 11:41:56
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Hi, Everyone.I was diagnosed with BEB 4 years ago but have experienced symptoms for about 6 years, since I was 44 years old. I receive Botox injections every 3 months. The results are decent for about a month, then a rapid decline. I also take "Sudafed Sinus Headache", almost every day, 2 tablets, during peak times of my day. This helps with the sensitivity to light and helps reduce the spasms somewhat. I recently consulted with a neurologist and experimented with Klonopin and Artane. The Klonopin didn't do anything for the spasms but did reduce my frustration level in tolerating them. I had negative reactions to the Artane. Now I plan on trying the alternative medicine route, i.e., essential minerals, herbs, etc. with professional guidance. I do work and am also going to school. The biggest challenge, as all of you know, is the frustration in dealing with this disorder. However, there is hope in our collective efforts and the wonderful efforts of the BEB Research Foundation. I live in the Philadelphia area and will be attending this year's annual conference in Philadelphia. I hope I meet some of you wonderful people there. Happy New Year to everyone! Rose
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Posted by: Anna Fuzie ®
01/23/2003, 06:36:17
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I was diagnosed in June of last year after only several weeks of having extremely severe symptoms. I thought (as I have said before) the problems I was having were due to a severe eye infection I had and irritation due to contacts. I do realize now though, I had symptoms a few months prior to severe onset which were exacerbated by the infection. I could not keep my eyes open, any light bothered me, functionally I was blind and could not work, drive or many other things. After many trips to urgent care, twice to family doctor(who prescribed valium because I was "stressed" not my words, his) I finally ended up at an eye specialist. I give credit for a quick diagnosis to my 18 year old daughter who was reading one of her teen magazines and came across a little article that for some reason talked about some rare disorders and BEB was in that article. She immediately cut it out and brought it to me and we looked it up on the internet and realized this is what it was. Finally, the opthamologist agreed to send me to a specialist who knew right away what I had. In the very beginning I had such severe BEB along with Apraxia and the Oral Mandibular Dystonia. I was taking 1 mg of Ativan 3X a day, Valium at night and Artane 5 mg 3 X a day. Botox injections every 2 months as I could barely make it to the two months (60 units). The first time I received the injections, it took 17 days for my eyes to open and each day was unpredictable as to what I would do.
At present...my last injections were in October. The only medication I am taking is Artane only every other day (5mg) and I plan to be off of that by the end of the month. I am scheduled in February to receive Botox again. I did not feel I needed them in January though my doctor was willing to give them to me. I am feeling very well and do not have any symptoms other than an occasionaly rapid eye blink which no one seems to notice other than myself and very mild, occasional twinges in my cheeks. At first, my eyes did great but I had such severe OMD but that seems to be lessening as well. I do not have any light sensitivity. I occasionaly have dry eyes but try to put drops in them several times a day. I do not consider myself cured or even in remission. I do think I am fortunate that the botox seems to be effective for me. Where I am in this is that I have a greater appreciation of many things and have reduced my work and stress level. At one point I was working 3 jobs, in school, and never sleeping. I so enjoy sleep and home and watching movies and shopping with my daughters these days. Not that I didn't before but sometimes when things happen it changes one's perspective.Good question.
Anna
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Posted by: Raymond C. Fudge ®
01/28/2003, 13:05:38
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I have lost track of how long I had been receiving BOTOX, about 4 years. I started out every three months. Early this year I was on a every two month regimen. About June, when I had to quit driving, I also began getting BOTOX on a monthly basis. So, don't let anyone tell you they can not give BOTOX more often than three months.I am still working, bouncing off walls, trouble with stairs, eyes clamp shut when I go outside and sometimes inside when walkiing. In another post, different thread, I mentioned I am scheduled for surgery the 26th of Februrary.
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Posted by: Ann Doyle ®
01/28/2003, 17:30:25
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It's not that my DR. says he can't give it more often than every 3 months but that he won't give them more often. I made my appointment for 11 weeks and he didn't notice. Since then, I have been making my appointments for every 10 weeks. I could really use it every 8 weeks. I've been looking for another DR. but without success so far. I tried one who was highly recommended but he was a total flop. Still looking, Ann Doyle
--modified by Ann Doyle at Wed, Jan 29, 2003, 14:55:01
Modified by at Wed, Jan 29, 2003, 14:55:02
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