Re: Introductions are in order
Well, I guess I'm next. I was diagnosed with beb/meige in 1996 just before I turned 27. My symptoms began 9 months prior, after I had my first baby. I have been receiving BOTOX injections ever since in the eyelids/surrounding muscles and jaw. I take Klonopin daily and recently started Parsitan. I have been married almost 13 years and have 2 daughters - Morgan Elizabeth 6 1/2 and Cory Breann 4. I received BOTOX during my pregnancy with Cory - she's perfect! My husband is a firefighter/paramedic and RN and is a huge support to me. I was a CPA in my "past life" and have been on long term disability for 2 1/2 years and was just approved for social security disability in Dec. I have recently assumed the role of Dallas area rep for the foundation. For any new comers - WELCOME!Kelly in Dallas
Re: Introductions are in order
I'm June Floyd and I live in Toronto, Canada. I'm 62 years young and have had beb/meige for about 7 years. I got the usual run-around with doctors being told it was `my age'and `dry eye' before it was diagnosed a couple of years later. I receive botox injections every 4-5 months and get a total of 90 units each time. I've tried a number of medications but have rejected them all. I do take Billberry tincture for light sensitivity and can watch tv and go to a film now (couldn't for 2 years) as long as its not the flashy kind. I am still light sensitive though.
I was born in London, U.K. and came to Toronto in 1960 and felt it was `home' from the very beginning. I've been married (second time around) to John for 11 years - he is a Prof. of Economics at the University of Toronto, where I worked for 20 years, before having to leave my position because of this disease. Between us we have 4 children (3 boys and a girl) and one grandaughter aged 11.
I really appreciate this bulletin board and the family of friends that post - its my support group and sometimes my sanity when things are bad. I have learned so much about this disease from the people here, and I hope I have shared some ideas as well - its all about give and take.
WELCOME TO ALL THE NEW PEOPLE AND THOSE THAT ARE LURKING - COME ON IN AND JOIN US.June in Toronto (beb/meige)
Intro's ...
Good idea, Shirley -Obviously, I'm your moderator and have been since the inception of this board. Age 55, married to Gene, 2 grown daughters; 35 and 30, 2 darling granddaughters; 6 and 19 mo's. Have had Dystonia, starting with Blepharospasm for about 5 years due to a reaction from the antibiotic Biaxin. Progression to Meige and Cervical(neck), spasms/tremors in other parts of the body at different times. Botox @ 300 units every 3 months from an MDS, use Neurontin and Clonazepam. Apraxia in one eye. Retired on disibility/SS one year after onset. No longer drive due to BEB. Rescue Rottweilers and enjoy digital photography immensely. Judy in WA State
--modified by Moderator-JB at Sun, Mar 24, 2002, 19:20:02
Re: Introductions are in order
Wonderful idea, Shirley.I am Sally Holt, age 67, developed BEB (diagnosed, that is) about three years ago after several years of "complaining" to doctors. My mother had it in the 70s, so I should have been more readily diagnosed but was always told "it's not hereditary." Hah! My husband, Jerry, is a century farmer on land his family homesteaded in Fairfield, WA. We were married 48 years ago on Valentine's DAy. We had four sons and have one grand-daughter who is a sophomore in college. We have two dogs, Kelly and Benji, who are the loves of my life (other than the rest of my family!). My "career" years were spent as a secretary/substitute teacher/jack of all trades sort of thing, then 20+ years with the school distrcit as school secretary or librarian. I LOVE reading. I took early retirement at age 62 because my job at that time was being eliminated and I didn't want to change, so it seemed a good time to leave. It worked out very well as the BEB steadily got worse and I doubt that I could have continued to work. I have been having BOTOX injections every two months for about three years now and they work quite well, enough so to be worth continuing. I was first put on Neurontin, but that totally zonked me out and the doctor felt there was no other drug worth trying on me. This bulletin board has been my lifeline and I've made wonderful friends here. I have a sense of humor and love to joke around with those who know I am joking, but can also be very serious and compassionate. My listening ear is always there for those in need. As June said ... Lurkers, come on in and join the fun. Sally in North Idaho near COeur d'Alene, ID, and Spokane, WA.
--modified by Sally - in - Idaho at Mon, Mar 25, 2002, 10:19:09
Re: Introductions are in order
Hello, everyone. I'm Jeff Harris, co-moderator of the Dystonia Bulletin Board. I've been active in that board since it started almost 10 years ago, and have been co-moderator since the untimely death of the founder of the BB, Larry Beinstock about 8 years ago. I'm not a regular here on the BEB board but I do lurk and drop in once in a while. You are all welcome to drop in and visit us at www.dystonia-bb.org/forums/asd. I don't have dystonia- I am the parent Michael, who is almost 18 and has generalized dystonia. Michael has had DBS surgery, and is now recovering from spinal fusion for Scoliosis, which he developed as a result of his dystonia. He's doing very well, and looking forward to graduating High School this Spring and starting college in September.
Re: Introductions are in order
Hi Jeff, I'm glad you told us that Michael, now almost 18 years old, is doing well. We, on this bb with beb, meige and a few other things, think we have it bad - but generalized dystonia is a lot tougher to deal with. Thank you, as a parent, for being involved with the Dystonia board and for sharing with us.june in Toronto (beb/meige)
Re: Welcome Jeff
Just wanted to welcome you to our bb. I do a lot of "lurking" on the Dystonia bulletin board when I have time-rarely post-just like to keep up with things as a lot of what you talk about is useful for us with BEB also. Feel free to come talk to us anytime. Your input is appreciated.Shirley in Arkansas with BEB/Apraxia
Re: Introductions are in order
Hi Jeff ... Welcome to this BB. I go to the "flip side" (as they say of records) and read your BB often, so I've known who you are. There is usually something of interest over there and lots of people are dealing with some pretty devastating problems.Thanks for your interest and dedication to keeping the board going. Drop in here anytime you can. Sally in North Idaho
Re: Introductions are in order
Jeff, welcome to the BB. You'll enjoy it as it's a great group of folks, frustrated a lot of the time. Humorous more often. I'm a lurker more than a responder. Sure hope your son gets the help he needs.
Joann in Cloudy,rainy Ark.
--modified by Joann Humphrey at Mon, Mar 25, 2002, 18:27:39
Re: Introductions are in order
I'm Evelyn Bolyard. I live in WA state. I don't have BEB, but as Shirley said at one point, I've been adopted. I was invited to post on the BEB bb by the moderator, Judy, who has been my friend since fourth grade. The board is a support place for me also. I am a diabetic of almost 45 years, have neuropathy and retinopathy as a result of the diabetes. I am blind in my left eye, and have had three surgeries this past year for gel replacement, cataract surgery and laser surgery to burn a hole in the sac that holds the lens in place, since the sac had become cloudy. I am deaf (happened in one day in my left ear in 1997, and in my right ear in 1998.) I received a Cochlear implant in 1999 by Dr. Charles Mangham, Jr, the same surgeon who did the brain tumor surgery for Kathy Goertzen of Channel 4 News..so even though I am quite limited, I can hear again. I had a stroke in Oct.1999, so am struggling to gain the full use of my right hip and leg. I do exercises every day, which seem to be helping somewhat. I am married to Gerry, whom I met in seventh grade. We have a 31 yr. old daughter and a precious 10 yr. old granddaughter.--modified by Evelyn at Sun, Mar 24, 2002, 23:40:20
Re: Introductions are in order
Hi EverybodyLyn Patterson and I live on 7 1/2 acres at Lake Clifton in Western Australia about 140 ks from Perth, the capital. I have had BEB for about 13 years now and have a good result with Botox. I recently found a great new doctor who has reduced the number of units I have by injecting in different sites. I was a librarian in a former life but now live with my husband of 35 years, 2 dogs, 2 chooks, 1 duck and 3 geese and love reading, computer stuff and gardening. I am the secretary of our local wildflower group. Lyn
Re: Introductions are in order
Hi y'all - I am Joyce from North Carolina. I live outside of High Point the "Furniture Capital of the World". Every year in the Spring and Fall furniture buyers from all over the world attend our International Home Furniture Market. I have BEB/Meige and Apraxia. I have had two limited myectomy, altho the first I believe was simply removing excess skin from the eyelids. Botox has worked for me only on a limited basis. Normally it works for one day and the longest was for 1 week. I tried the Myobloc but it did not help either. It caused double vision for two weeks and not one day of being able to see. I consider the Botox "working" if I am able to keep my eyes open with no spasms or squeezing of the eyelids. I consider it a good day if I have only blinking but those days are rare and far between. I can watch TV (maybe it is because I get focused on it and don't notice if my eyes close or blink). I have problems reading (I love to read) but I am able to do Bible studies, I guess it is because I get so focused and concentrating on what I am studing. My mind tends to wander when I read so maybe that is why I have a hard time reading. I tend to have dry eyes and have experienced more trouble with the dry eye syndrome than anything else. I don't understand why my eyes are dry, I drown them in ointment at night and use eye drops lots of time during the day. I am 65 years Young (I have a 12 year old inside who wants to come out and play but he can't because sunlight kills my eyes) I was a tom boy growing up and played church league soft ball up into my 50's. I go outside and they shut down. I started having problems when I was approx. 60 but it took 1 1/2 years to find a doctor who could put a name to this crazy disorder. In my former life I was a tole and decorative painter. I love painting "Folk art" and my house is filled with things I have painted. I can still paint simple things but can't do the fine detail that I once could. I was a school secretary at a Junior High for 8 years and I loved that job, but moved on when all of the children left home. I am married to Gene and this August 7th I will have been married 48 years. We have 4 children, two boys and two girls. They are all grown and married so we have 4 in-laws - but two are out-laws - Bonnie and Clyde. (family joke). Bonnie is married to my oldest son Rick and Debbie our oldest girl is married to Clyde. We have 8 grand children and 5 grandchildren. The oldest of my grandchildren, Kevin (25 yrs. old) has had complete kidney failure (Bergers Disease) and is on Dialysis 3 times a week. We are praying for a kidney because that is his only hope. All in all, I can't complain (altho I do on occasion) but I have a good life. My family doesn't understand the nature of this disorder and I think they don't really want to deal with it. So I come to the BB to talk to people who understand what I mean when I tell them my problems. I don't post often but when I do I tend to be long winded but that's OK, because it is a release to let it all go. Joyce in NC where it is going to be 75 degrees today and I really need to go pull weeds from my flower bed but I will have to protect my eyes if I go out.
Re: Introductions are in order
Hi, I'm Joann Humphrey, in Fort Smith, Ark. age 65. Have had BEB since 1997, but wasn't officially diagnosed till the fall of '99. I've been getting botox every 3 months since that time. I'm fortunate to be able to get my injections right here in Ft Smith by a neurologist who trained under one of the Dr. who was at the Scottsdale convention last July. By the way, if you've never been to a BEBRF convention I highly recommend it. You'll meet lots of others with similar problems & you'll learn you're not as bad off as others.
I've been married 45 yrs. have 4 children, each one lives in a different state, Florida, Kansas, Louisana, & Ark. 6 Grandchildren, the oldest one will graduate from high school in May. I've embroidered her a quilt of the 50 states. When my eyes are really bad I'm able to knit on an afhgan. I'm also a Beanie Baby collector.
Most of the time my eyes are quite good as I had a limited myectomy in Jan of '02. Haven't needed any botox yet but do take klonopin .5 gm 4 times a day.
I used to play lots of duplicate & tournament bridge, but have given that up, guess it's too stressful. However I am teaching 2 classes now which I truly enjoy.
I was born & raised in Iowa. Married to a serviceman so we traveled around for 25 yrs. before settling in Ft Smith. His last duty station was Ft Chaffee where he was Post Engineer. I was able to travel with him to Germany, Panama Canal Zone, & several places in the U.S.A. He retired 21 years ago & keeps busy with rental property.
I'm one of 5 sisters & we'll be getting together at the Amana Colonies in mid May. I'm looking forward to that as we are scattered & don't get together very often.
This is lots more than I've ever said on the BB. I do read almost every word of what all of you write & love you're pity parties, etc.
Joann in Arkansas where we're under a severe thunderstorm watch.--modified by Joann Humphrey at Mon, Mar 25, 2002, 12:03:59
Re: Introductions are in order
Hi JoannWas interested to see you used to play bridge. I was a Tournament Director and taught a couple of classes of beginners when I played, but I stopped playing after I had a whiplash about 1985 a few years before the onset of BEB. Also I found it was taking over my life as my husband and I were playing nearly 7 days a week. Couldn't imagine playing with BEB - the concentration would be horrendous. Have to say I don't miss it - wildflowers are much more restful. Lyn having a beautiful warm Autumn
Re: Introductions are in order
Hi, Everyone,
This is going to be a bit long in breath . But since I “complained” , you deserve to hear about me. So here goes:
First, thank you so much, Shirley, for initiating this series of introductions. It’s good to get to know everyone a little better. -- It seems I am the motherhen of you all agewise. Can’t believe how quickly time passes. Born in Germany, I followed my husband to Canada in 1957 - in my early 20s. In Germany he was one of my flight instructors who still likes to jokingly convince people that this was the only “glorious” time in our 40-some years of marriage when his wife followed his instructions - yeah, and cows can fly... Hopefully, the proverbial coin dropped when I reminded him of Mahatma Gandhi’s words of wisdom : “The only tyrant I accept in this world is the ‘still small voice’ within me.” We have two sons, Doug & Dirk, who are in their early 40s (UofA, Edmonton, grads - Doug getting his masters now) and six grandchildren (whole family dedicated to hockey). We have just retired from 17 yrs. of running one of the busiest bed & breakfasts in the Okanagan. Time to smell the roses - after 17 yrs. of lost summers (too busy for any summer activities) and to, finally, get some much needed rest. However, I’ll miss meeting all of those wonderful people from most parts of this globe. Guests from 40 diff. countries left a treasure of countless stories and priceless knowledge regarding their countries and cultures behind for us to cherish. Approx. 7 years ago I noticed difficulties with my jaws. A specialist in Vancouver assured me that grinding my teeth while sleeping was the cause and that capping all teeth would solve the problem. Well, with healthy teeth, not the best of news - especially when, 16,000 CADs later, nothing had changed to the better.
After 10 days of tests in Vancouver's UBC Hospital, I was diagnosed with Meige Syndrome and also learned that drugs were not the answer for me. I am now getting botox injections every 3 months - 220 units (35 ea. eye; 75 ea. jaw). They help with my eyes but not with the jaws.
Unfortunately, I have to be driven to Vancouver, approx. 400km ea. way. Prior to injections, Botox is no longer effective enough to drive that distance myself. Although driving normally relaxes me, this long a distance would become stressful enough to trigger spasms.
We have quite a few doctors here who “do” the eyes, but there’s none who injects into jaws. Since my eyes have never closed unexpectedly, I can still enjoy driving, skiing, sailing and other outdoors activities, all of which are very stress relieving for me, stress being a potential enemy of mine.
After a recent cataract surgery on one eye, my ophthalmologist warned me that my eyes are too dry (he knows about my disorder)and wants me to use REFRESH LIQUIGEL from now on instead of Tears Naturale. Since my eyes can’t close completely due to the botox, gels and patches during the night help keeping them moist . As a longtime volunteer for the C.C.S., I spend many hours with Cancer patients. Witnessing their valiant battle with this dreadful disease (some of them terminally ill and with us for pain control treatments only), puts everything in perspective. One tends to ask oneself what are YOU complaining about. Frustrated as I do get with this disorder at times, feeling sorry for myself... no way. Gisela - from B.C.'s beautiful Okanagan Valley, who hopes she’ll be forgiven for taken much of your time and her not so perfect English meets with your approval.
--modified by Gisela Rentmeister at Tue, Mar 26, 2002, 21:52:07
Re: Introductions /have you met Christel?
Gisela, have you met Christel? She is also from Germany and a super special person!Sally in North Idaho BEB/Meige
Re: Introductions /have you met Christel?
Thanks, Sally, for your suggestion. Actually, I like to think I know Christel rather well by now and am happy about it. She responded to my first post, and we've been e-mailing each other since. And I agree with you, Christel seems to be a very nice person.Gisela - who really thinks she sorta hit the jackpot with you guys.
Re: Introductions are in order
Hi. I'm Lynn Yarbrough. Male, born 7/17/30. Although I started showing symptoms of BEB about age 30, it was misdiagnosed twice (as psychosomatic) so it was another 30 years before I got a correct diagnosis. Finally I got a correct diagnosis (by my psychiatrist!) and Botox treatment at Mass Eye & Ear in Boston, MA. in 1990. That year the FDA had just approved Botox for BEB, and it has worked very well for me. I have had injections from 7 different doctors, 3/East Coast, 4/West coast. My typical dose is 20 MU among 5 sites per eye, 3 in the brows, 2 in the corners. I recover slowly from the effects of Botox, which therefore lasts 6-7 months. Before settling on Botox as my solution to my problem, I tried all available drugs and found them all wanting. I do take Benadryl for allergies, but it has no effect on my BEB. I am currently living in Palm Desert, CA with my wife Pat, and our Welsh Corgi named Rocky. I am the SoCal representative for BEBRF and hold periodic meetings in our home.
Re: Introductions are in order
Hi, My name is Colleen Milligan I live in Southern IL.
I will be 70 years old this friday. I am the old one on the bb
buy i dont feel old.Will be married to Ralph 52 years in May
A son 50 daugther 47 and a daugther 42. Seven Grandchildern.
Bebfor 4 years.Have used both Botox and myobloc. Botox works best for me.My eyes are doing good right now.Got my last injections the last of
Jan.Hope i can go 3 months this time.I also have Parkinson about 2 years
now it is also doing better.I AM VERY THANKFUL.
I joined curves for women go 4 times a week.I feel better now than i have in a long time.I can drive most anytime and do most of my work.
I can now zipp my jeans without laying on the bed that is a plus.
Take Care Everyone
Colleen in IL
Re: Introductions are in order
Good idea, Shirley and sooo glad you are assuming your Mother Chook
role again.....:<) And, welcome, Gisela--thanks for sharing about yourself and joining our "family" where everyone is welcome.I'm Joanne Matuzas, 55 yrs young, divorced mom of 22 yr. old daugher
who is just graduating from UCSD with a major in mechanical engineering
and has been offered a great job in research and development with TRW in Redondo Beach, CA. Onset of blepharospasm in late 97 with progression to meige and breathing irregularities. Am still working as an admin tech at a local community college. They have accommodated my work station so I am
able to function on the job. Also am the BEBRF rep in and around
area of San Diego, CA. (Great place to live, by the way) Am currently seeing neurologist #2 who is studying under an MDS. Botox injections every 2-3 months, benedryl, Serax, supplements. Also do
some yoga and other activities for mind-body connection. Love art
and traveling and am learning to love digging in the dirt (altho I know
almost nothing about it so glad for Virginia and the others who doknow
about this). This BB has also been a lifeline for me. Lately my postings have been
fewer due to time constraints but this is a great place to be!!! Joanne Matuzas, San Diego, CA
Re: Introductions are in order
I was born in 1943 and developed blepharospasm in 1993. It took me a full year to get a correct diagnosis. It would have taken a lot longer if I had not been a very aggressive patient who shopped around. I have had BOTOX® every three months for eight years. This is a bit of a mission as it is a $600 flight from where I live at the hub of the Great Lakes to Toronto.Before I started with my present doctor, I asked him if he would take on a patient who wanted to be involved in treatment modification decisions. He said, "Yes", and now whenever he has a resident with him during my injections, he remarks that I have the most customized regime of any of his patients. The scientist in me always wants to keep experimenting to try to get a better fix. I have not been able to drive since the onset of the blepharospasm but, until last year, the BOTOX® treatments allowed me to read and watch television most of the time. I have been through two wives - no immediate prospect of a third. Currently, I share my home with two large black cats - one a polydactyl who pads around like a small panther. Here in the northern boonies, I grew a 13-foot sunflower last summer (eat your heart out Virginia). I still work as a research scientist although it is getting to be a bit of a struggle due to the decreased efficacy of the BOTOX® treatments. Weeds in forestry is my field. The politically correct part of my work involves a web-based publication on forest plants. The politically incorrect part involves optimization of GPS-based navigation during aerial application of herbicides. I have been involved with dystonia on the Internet since the spring of 1995 when Larry Bienstock (the Larry Jeff referred to) and I decided that the World Wide Web was a medium which should be used to increase awareness of the disorder and created a dystonia web page. The Blepharospasm Bulletin Board started in 1997 after Judy Blackman asked me if I would create a forum for blephros. I said I would if she would moderate it.
Re: Introductions are in order
Very interesting, Bob. This is the most detailed introduction I've had to you and was enjoyable.What a wonderful service you, Larry and Judy did in setting up these bulletin boards. THANK YOU from the bottom of my heart. Sally in North Idaho who would love to see your part of the county. (And congratulations on that sunflower!)
Re: Introductions are in order
Hello, My name is Corrie Thomann, age 70, I live in the Piedmont area of South Carolina, married 43 years to Paul a native of Switzerland. Care taker for my Mother 92 years old. Enjoy gardening, cooking, sewing and all kinds of handwork.
I do not post often, although I usually read most of the posts. I have learned so much from the information that is mentioned on it.Did not know of the BB until less than one year ago.I have had Blepharospasm for 7 years. Was a Botox failure! Received Botox every three months for four yrars, with perhaps only a few days to a week of any hint of help,usually had side effect of ptosis or a stiff jaw and upper lip. Tried three different Drs. and was always the same.Can drive you nuts!In Dec. of 1999 I had a limited myectomy with ptosis repair and upper punctual cautherization.It has worked wonders for me. Since the surgery I have not had Botox nor do I take any medication for Blepharospasm and consider myself 75% better, perhaps even more. Still am very sensitive to overhead lights and brightness outside. I wear dark glasses outside and inside if under bright lights. Since the cauterization of tear ducts, the dryness of eyes is so much better, I only use ointment at night and drops occasionaly during the day.I try to avoid stress and rest my eyes some during day if possible.At my age that is necessary anyway! Do not ever give up!
Re: Introductions are in order
Hi everyone, I'm new to this BB about a month. I've had BEB since New Years eve 1980, when I was 46 years old. It was strange my eyes never seemed to bother me before that night at a party. I just couldn't seem to keep my eyes open although it didn't feel like they were tired. I thought it was my new reading glasses causing the problem. I had never worn glasses before only clear glass safety glasses at work and they even caused me to blink. After going thru several more glass fittings of which nothing helped I gave up and just started living with the problem.About a year or so later I started going to a different Ophthomologist,who stopped by my office one day to drop off an article he had found in the Wall Street Journal describing Blepharospasm. After reading it several times I didn't think it was what I had. Over the next several years I went to two or three different doctors and even Biofeedback, but nothing helped. I was prescribed several drugs, Artane and Endep which seemed to help a little bit but I didn't like the dry mouth side effects. Eventually, I decided that my eyelids might be causing the problem so in 1985 I had Blepharoplasty performed on my upper lids. I thought it would help but it didn't. By 1987 I started going to a Neuorolgist, he determined I had BEB but I disagreed with him. He recommended that I try a new treatment of Botox injections that some doctors were experimenting with at Columbia University Hoapital in NY city. He set up an appointment for me but at the last minute I got cold feet and backed out. Somewhere about 1992 his office was given Botox injections and then I started getting them about every 3 months. Sometimes they work sometimes they don't. As far as the rest of my story I'm a retired engineer and Builder. Been married for forty years and have four grown children. I live in Pennsylvania in the summer and sunny Florida in the winter.
Hope I haven't bored you with my lengthy story. Regards from Charlie in sunny Florida where it was a balmy 83 degrees today
Re: Introductions are in order
I'm Virginia Hurst, 53, married to Carl (who brings me warm washcloths every morning), mother of two children, a daughter and a son. I developed symptoms of BEB a little over 4 years ago, beginning with photophobia, dry eyes and excessive blinking. My ophthalmologist cauterized my lower puncta, which has helped the dry eyes, but not completely relieved them. I went for a year before being diagnosed in a restaurant by a fellow Blepharo. I started Botox in March 1999 and it helped for about a year. In Nov. 2000, I had a limited myectomy, which had helped considerably. I have Meige with respiratory involvement which is more of a problem to me than blepharospasm. I take Klonopin, about .75 mg/day.I am an avid gardener, an active volunteer in our local botanical garden and webmaster for their web site. I keep my Webster's handy and my search engine open for those trivial questions that crop up here on the bb. I can also serve as a reference to public gardens in the southeast. ;-) I have lettuce now growing in my vegetable garden (eat your heart out Bob Campbell). Virginia in Alabama
Re: Introductions are in order
Well, you got me there. It was -20oC yesterday. Today, I started tomatoes in the greenhouse which I will be able to put out in two months.
Re: Introductions are in order
Sorry, Bob, I just couldn't resist. I enjoy the long growing season here, even if I do have to put up with the hot, humid summers. I would love to have seen your sunflower.Good luck with the tomatoes. We will be putting ours out in a few weeks.
Re: Introductions are in order
Hello everyone in the BEBRF BB family. I came to know this wonderful group in 1998 when I first found out about the Foundation and BB. This was eight years after I first began to have problems with my eyes at the age of 45. It took three years and several doctors to get the diagnosis of BEB. Botox was given and I was able to lead a fairly normal life for the next three years, Then the Botox stopped working. As my symptoms got worse, I was so glad to find the BB and learn that others were dealing with this same disorder. In early 2000 I was able to find a new Dr in my home town to try Botox again, with limited success the last two years. But the problems associated with Meige have gotten real bad and I have been forced to give up much of what used to be my life. Each day is now a struggle just to survive. I can't drive (or ride), or be in crowds or converse much, or walk/exercise, or work, or read or watch TV. I am so thankful for this BB. It is my support group and the only thing that keeps me going at times.
In addition to the Botox every 8-12 weeks, I take Klonopin 3-4x a day, and some supplements for eyes.
I have been happily married for 35 years, have a daughter and son, and two grandchildren. My work has been publishing Christian literature for over 35 years, which I am still trying to do as I am able.
I went to the BEBRF conference last year and met some of the lovely folks on this board. By the way, I was PUBLICLY embarrassed there by our "mother" Shirley for being a "lurker." Now it comes out she and quite a few others did the same thing.
I guess I am more the quiet type, and still don't post often, but read whatever posts my eyes will allow.
Tim in PA, BEB/Meige
Re: Tim, Tim, Tim
Now Tim, there were only 350 or so people at that conference. I guess that I did have a microphone and everyone's attention. :-) No one even noticed that you blushed as we were all wearing our rose tinted lenses. And I only lurked for 3 months-I believe that you had been lurking for over 2 years. I was merely using you as an example of the benefit that one can obtain just by reading the bb.
You "knew" all of us just by reading the posts. That gave you an unfair advantage when you finally "surfaced". It was really a great moment when you popped up and said that you were going to the conference and had been lurking for 2 years. Not everyone has their very own personal welcoming committee when they arrive at a conference. I really enjoyed meeting you and your wife. It still gives me the warm fuzzies. I'm glad that you surfaced.Shirley in Arkansas who wonders how many others have been "lurking" for a long time. We could have a contest to see who has lurked for the longest time. Of course, you would have to post. Might not be such a bad thing. Anyone willing to come out of the "archives" for the first time?
Re: Introductions are in order
Howdy! my name is Ken Collins, I live in Flower Mound TX (DFW) and have had BEB for about 2 years. I am 39 and I have 2 girls, 3 and 6. A supportive wife, married 13 years. I am still trying to figure this disorder out like so many others, but after attending the support meeting in Dallas I hope to have a better grip on it soon with a new Doctor. I have tried Klonopin, zzzzzzzzz; Artane, pass the water; and have had 3 Botox inj. that have helped somewhat. P.S. Save this thread on your computer and you can go back anytime to look up more info about the members! --modified by Ken C. at Mon, Apr 01, 2002, 12:42:31
Re: Introductions are in order
I think that introductions are a great idea, although I feel I already know so much about most of you after reading your posts for the past year. Do you have a category "semi-lurker"? ...'cause I guess that's me. I pop on every once in a while when I get inspired or when I think I might be of help...although I don't know much more about BEB than what I've experienced myself, and what I've heard others of you say. I'm 63...married...with one married daughter involved in criminal justice, and a son-in-law who is a police officer. I accepted an early retirement incentive offered 8 years ago at Rutgers University in New Jersey, where I had been director of parking services for about 17 years (talk about stress--whew!!!). The retirement was timely, because after progressively suffering the effects of BEB and Meige since my mid-40's, it really was beginning to getting to me. I wasn't diagnosed until 2 years ago, when I began receiving Botox injections. I get them every 3 months, and they help me a great deal except for the last 2 to 3 weeks of the period (that's where I am right now). I can't decide which was more important for me--the Botox injections or the diagnosis. Like many of you, I'd been running from doctor to doctor to find out what was wrong with me. Just about the time when I thought that I must be out of my mind because I wasn't able to control the spasms in my eyes, face and jaw, I found this wonderful neoro opthalmologist who knew what BEB and Meige was. I will love him forever. I have so much to do, and so much I enjoy doing, that I won't allow this BEB thing to get me down. I'm a caregiver for my 94 year old dad, who keeps me on my toes with his energy. I have a Siamese Cat named "Sam" and a Husband named "Frank". (Not mentioned,incidently,in order of importance--in case he reads this) My hobbies are diverse...I enjoy sketching and painting...do statue restoration...hardscaping and landscaping my yard...decorating...crafting... flower arranging ... woodworking, and furniture re-finishing. I especially enjoy working "close-up" on things, because that's when my BEB bothers me the least. Driving becomes a problem about 2 weeks before my Botox shots are due, and I don't enjoy socializing as much as I used to, because I hate the way I appear with this problem going on. I love to shop, but I'm dangerous pushing a shopping cart when the Botox begins to wear off. I look to this bulletin board every day, and I'm so happy you all are here to "talk" to me, even though I don't talk back very much. By the way....Can we have a "show of hands" from those who are expecting to attend the annual workshop in Texas? I'm hoping to attend my very first one. Rita in New Jersey
Re: Houston Conference
Rita, my husband and I plan on being there. Shirley in Arkansas
Re: Houston Conference
Shirley....wonderful!!! I feel as though I already know you from your many postings on the BB, and it will be nice to finally meet you in person. Will you be wearing a big red rose so I can recognize you? Or...if the eyes are shutting down for me about that time, you can just wait for someone to bump into you, and that'll be me. Have a great day !Rita in New Jersey (waiting for April 16th and my next Botox shots.)
Re: Houston Conference
Rita, last year we had the bb people put little computer stickers on their name tags. That made it a little easier to spot each other. I'll be the one in the '"rose colored glasses" but so will about a fourth of the others. We also got together and had lunch on Friday before the conference began for those that could get there early enough. We'll have to toss out some ideas about meeting up with each other when it gets a little closer to the time. Start making a list of names of people who are going to be there and then you'll know what people you will be looking for. It is fun and very informative. It will be nice to see you there.Shirley in Arkansas
Re: Introductions are in order
This is an excellent idea Shirley. I am relatively new here too so I appreciate finding out about my new "family". I say this because of the way you have welcomed me and made me feel one of you.
I was diagnosed last December with Blepharospasm the minute that I walked into an Opthalmologist's clinic, so was very lucky compared to some of you. However I had gone the rounds of the Doctors who kept saying I had dry eyes and to persist with the liquid tears. Like Robert i kept saying "this is more than "dry eyes"," until eventually it was realised that I really needed another more expert opinion and I was referred to the Opthalmologist at the local hospital here.
I am 54, married to a wonderful and very supportive husband, and we have 2 children. Our daughter lives in New Zealand, and our son in England and we keep in touch almost every day by telephone or e-mailing. I have found the computer to be a wonderful addition to my life in the last 2 years!
I am presently on "sick leave " from my job and the Botox is now starting to work and giving me hope for a reasonable future even if I still can't drive. The Occupational Nurse is putting me forward for early retirement due to ill health as she doesn't think I should be working with strong acids and solvents etc. I agree, and am delighted,but realise that I will have to persuade their Doctor that this is a real disease, and not one just made up....I find some people find it hard to understand my problems when they see me when my eyes are open normally.
I hope in my "new life" to have more time for friends, walk my dog more often, have a pristine garden (!!!) and plan for sailing trips in our boat. And also to go abroad to Italy..my husband has at last consented to take me there! I do feel anxious about being vulnerable abroad as I feel I will need my husband there with me all the time, so I haven't actually booked anything until I find out more of how I am going to react to the Botox, and my dates for getting them. I feel much, much better now that the Botox is working but am aware that this will all change. It's frustating to not be able to make plans to do things now that I can...and while I still can. I also plan to come to California one of these fine days, perhaps en route to my daughters wedding in NZ, to see my cousins there.....Perhaps in a couple of years I will be able to go there for a proper holiday and meet up with some of you!
Re: Introductions are in order
Hi Pippa; Thanks for telling your story. I did have a question about your current work situation. You mention "early retirement". Does that mean that you will retire with benefits such as health insurance and retirement income? The only reason I ask is that you want to make sure that you are not better off getting off on a long term or permanent disability program if you and/or your Company has been paying into one. Sometiems that can lead to a much higher payment.You also were questioning whether the Company Doctor would approve of your retiring. Make sure he is aware of the liability isssue that you present. Now that the Company is aware of your disorder and the problems that it could entail, any accident that occurs whether it be your walking into something or somebody and causing injury to yourself or someone else is now their liability also. I wish you luck and hope that you get to enjoy all the things in life you want to and especially get to visit your family often......Alan
Re: Introductions are in order
Thanks Alan for all the ideas! i will certainly remember to tell him/her all the possible accidents I could have that they would be liable for. That is a very good idea indeed.
As for the long term disability I am on full pay just now for 6 months and then half pay for 6 months. If I retire I am not sure whether my retirement pension is based on the last year which would include the half pay. So I will have to find that out now that you have put the question into my head....and soon. People have recommended that I wait until the half pay 6 months is up before retiring and that possibly is still the best way. However I know it takes forever to get retirement, as everybody is retiring, or trying to due to stress. So I haven't had an appointment yet with the Company Doctor, and have been told it will be a couple of months yet.
As I am in Britain I will always have the National Health Service..although that is deteriorating very rapidly now. I still would not have seen a consultant for possibly another 6 months as there is such a waiting list in the NHS, so I decided to go privately. Thank goodness I could afford it! I feel for all those people who are suffering and can't get to see a doctor who really understands their problems.
Thanks again..Pippa
--modified by Pippa at Fri, Mar 29, 2002, 17:16:38
Re: Introductions are in order
Hi Everyone, I've been reading everyone's intro tonight. Had a bad week and haven't been able to use the computer. I'm 45, divorced and have two great children. My daughter is 15 and has been my guardian angel the last 3 months my son is 9 and I'm just trying to keep up with him.
I am a teacher assistant in a primary school. I noticed difficulties with my eyes about 5 months ago and January I driving to work one morning and couldnt keep my eyes open. A neurologist diagnosed me with Blepharospasm and I am seeing an opthamologist {hope spelling is correct}. I had first injections of Botox a month ago. I saw improvements for about two days. I had second set of injections 4 days ago. He increased amount and some of the injection sites. Still waiting to see some improvement. I really miss driving. I haven't driven since January. Movement really irritates my blepharospasm. I usually take care of everyone around here [parents, aunt,etc}. I'm trying to make it to the end of May when school gets out. Don't know what I'll do then. Some days can be really hard. Sorry to keep babbling on. Talk with you all later. Yes, Carol B. I have alot of itching around my eyes after the botox injections.Dianne B. from NC where it was a beautiful day!
Re: Introductions are in order
Hi,
I loved reading all the introductions. I'm Denise McKew, and I am also pretty new to this board.
I guess in a way I was lucky when it came to diagnosing my BEB. I had a car accident last May, and hit the right side of my face on the steering wheel, injuring the facial nerve. Because of that injury, I was going to a pain clinic at Beth Isreal in Boston, every three months. That doctor (Dr. Bawja) recognized the BEB immediatly and sent me to Dr Tarsy, the motion disorder specialist. So I had a confirmed diagnosis only 2 1/2 months after it started. I do believe that the trauma from the accident caused my BEB.
I had Botox last Jan for my facial pain, and will have my first Botox for the BEB in April. I am both nervous and excited about it.
I also have chronic pain in my neck and shoulders from another accident. On the bright side, not working has decreased that pain some.
I just turned 39, and live in Lewiston Maine. My husband Mike is 41. We been married for almost 3 years. We do not have any children. We have a dog Sammy, and a cat named Bubba. Sammy is my dog/first born. I have spoiled him rotten! Mike and I are big Red Sox fans and can't wait for opening day.
I grew up in Walpole MA, with 4 brothers and 1 sister. I came to Maine for college, and never really left after that.
I used to work in Customer Service - can't say I miss it. I am also an artist and I try to paint much as possible on good days. I am trying to keep my projects as simple as possible, so that I don't get discouraged.
I want to thank you all again for all the support.
Take Care
Denise
Re: TRAUMA
Hi Denise, I enjoyed reading your story - thanks for posting. We did our own survey a while back about trauma causing beb. I think a number of us feel it might have caused it, other's had not had trauma at all. Not working has given you time to smell the roses (paint) and enjoy your family (Mike plus Sammy and Bubba) - enjoy!June in Toronto (beb/meige)
Re: Introductions are in order
Denise, How interesting that your cat's name is Bubba. That's my daughter's cat's name, too.
Evelyn in WA
Re: Introductions are in order
Hi, I am 53, married, have 3 lovely daughters and I live in New Zealand.We have just moved cities and are now settling in to our new home in Wellington. We used to live in Christchurch. I don't post very often, but I have been trying to do a lot of reading to find out more about this eye problem. I find reading what you all write is great, I have never met another person with blepharospasm, most people have never heard of it. I can still drive, short distances, reading seems to be getting harder to do and watching tv is a nightmare. I am about to go to a new Doctor, could be interesting. I don't have Botox, am not on any medication and have no idea how or why I ended up getting this.
Happy Easter break to everyone,
Chris
ps. Pippa, where in NZ is your daughter? By the way someone asked what Pippa was short for, here "Pippa" is short for Phillipa.
Re: Introductions are in order/Chris and New Zealand
Hi Chris! My daughter used to live in Wellington until very recently, but has just moved up to Auckland a few weeks ago!
She is getting married next year..so we will be coming over to NZ then. And hope to visit Wellington as i believe it is really beautiful from all the postcards etc that my daughter has sent us, so maybe we will be able to meet another Blephro after all! The date is not fixed yet though,but may be next February. We must keep in touch.
Yes, Pippa is short for Phillipa here too.
What made you move up to Wellington?
Re: Introductions are in order/Chris and New Zealand
I hope you do visit NZ. We moved because I nagged away about how it was time for us to have a change. We have been married 32 years and the last 25 were in Christchurch, raising a family etc. I felt we were stuck in a rut and would never move out of our house unless we moved cities. So here we are. I am from Ch-Ch originally, my husband is from Dunedin and we met, and lived, in Wellington, a long time ago. Our daughters are all in the Nth Island.
Re: Introductions are in order
Hi Everyone... I hope I'm not too late for the introductions.... my brand new computer has been down for the past week (the tech said my "mother board"???? was bad). For someone who never wanted a computer -I certainly missed it - especially reading the BB - I got so far behind-it took a couple of days to catch up. I have been reading the BB faithfully since I found it, but I guess I beong in the category with Rita,a"semi-lurker". It took me a long time to get up enough nerve to post a reply. I understand what Gisela was saying about "an apprehension to interrupt those who have been chatting back and forth for so long" - but I don't think you should do anything about that- we who are nervous about it will just have to get over it!! I have laughed and cried with all of you. You certainly are a GREAT bunch of support-givers!!!
Anyway, my name is Nancy Williams, I'm 57 years old and have had Blepharospasm for about 4 years. It started very similiar to most - squinting and blinking, trouble driving, reading and watching tv. I drove to the restaurant where I worked as a waitress(my profession of 35 yrs.)at 5 am in the morning so I didn't find that a problem since it was still dark out and I didn't pass very many cars at that hour. But the lights in the restaurant and as the day went on -my eyes got really bad- I was embarrassed trying to wait on people properly and Heaven Forbid- walking around with a full pot of hot coffee!!!!! I took a 2 week leave to try to find out what was wrong with my eyes and was never able to go back. The work was getting a little hard for someone my age (haha) but I do miss being around people. I applied for SS Disability, and was granted that after 2 refusals - I got a good lawyer.I started with 2 local opthalmologists who treated me for dry eye ( I was a normal birth according to my mother, had a normal childhood, no car accidents or other trauma to my head that I can remember - so I don't really have a clue what caused it other than dry eye). One of the dr.s put punctal plugs in my lower tear ducts..but nothing helped.
I was diagnosed in July 1998 at Wills Eye Hospital in Phila. and received 2 sets of Botox (3 months apart). Neither worked for me!!
Surgery was suggested but I decided to hold off on that and go somewhere
else.... I now go to The Wilmer Eye Institute (Johns Hopkins Hospital) in Baltimore where I found a wonderful neuro-opthalmologist who has given me back my life (Not perfect, but much better) with 100 units
of Botox (8 shots around each eye) every 3 months. I am married (second time around) to Bill who is a retired PA. State Trooper.We have been married for 26 years, and I have a daughter and a son and 2 step-sons who are all in their 30s and live away from home but all within 30 miles of us. I have a 14 yr. old grandson, Brandin,
who you will hear me mention often probably, because he is the "Light of my Life" and 2 step- grandchildren - a boy and a girl. I was asked to be the NE PA. Area Rep. in 1999, I have spoken to Lion's Clubs in my area and received contributions for research. I hold a support group meeting (first one 3 came and the last one 8 were able to come) so I guess I'll try for more next time - Early May. With the help of Nilda Rendino I have just contacted 12 more patients ( added to the 16 I have already contacted) I may just have to rent a Hall!!!!!
Yippee!!! I probably have bored you enough by now - for being a little shy- once I get going - I really go!!!! I do not take any medications - but I do use Benedryl! It seems to work for me. I only drive the 6 miles into town(all back country roads) on a "good eye" day. I do, however, cross stitch which completely stops the spasms (you can imagine the looks I get when I tell people that)
and I play both the organ and the piano in my church with very little trouble. People in my church have a hard time understanding this so I tell them "the Lord gives me a kick in the butt and says go make a joyful noise unto the Lord" - and that's exactly what I do!!!!!! ENOUGH!!! is ENOUGH!!! Nancy - NE PA/beb where it's like Spring today - 2 days ago we had an ice storm!!!!! the joys of living in beautiful NE PA!!!!!!
Re: Introductions are in order
Hi Nancy,Your post was such enjoyable reading! It's wonderful to hear from someone who is doing quite well and who is making the best of this situation and has a happy outlook on life. Keep it up and please come here often to spread your joy around. Just go on making a joyful noise wherever you are. Sally in North Idaho where it's chilly and windy.
Re: Introductions are in order
Hi Nancy,
I'm from Allentown, PA and have been looking for a support group. What part of NE PA are you from?
Regards,
Charlie
Re: Introductions are in order/Charlie
Hi Charlie,
It's always nice to know I have another "friend in Pa."
I live in UnionDale which is about 25 miles north of Scranton.
Allentown is only about 1 1/2 hours from me, so I would love it if you could make the next support group meeting. The meeting will be in Scranton which I have found is more convenient for those who attend.
The last meeting was held in the Clarion Hotel right off exit 184 of Interstate 81, and I will most likely use the same place in early May.
I will let you know the details as soon as I can.Thank you so much for responding to my post. Nancy in NE PA.
Re: Introductions are in order/Nancy
Nancy, Let me know when and where your meeting will be in May. I just missed one in Philadelphia because of a death in the family, and I'm really looking forward to meeting other folks with this problem. My Botox should be in full effect around then, and it would be a beautiful drive (I live in Central NJ). Thanks.....Rita...
Re: Introductions are in order/Nancy
Hi Rita..
I certainly will! I always look forward to meeting new "blefro" friends. I, too will be getting injections on April 16 - right after that I will know definitely the date of the meeting. Will let you know
as soon as possible.Nancy/NE.PA./beb
Re: Introductions are in order/Nancy
Thanks, Nancy...
I'll be thinking about you on the 16th....and I'll watch for your reply about the date of the meeting.
Hope your shots make you feel 1000% better..... Rita
Re: Introductions are in order
Hi Nancy,
I just sent a reply to you but I don,t think it went through. What part of PA are you from? I'm looking for a support group to join. I can be reached at cgbostick@aol.com.
Charlie from Allentown, PA
Re: Introduce yourself
I just thought that I would bump this up to the first page. We're in the process of introducing ourselves and telling whatever we feel like sharing to help get to know each other a little better. There are still folks out there that haven't introduced themselves and now is a good time to do so. I'd also love to see some new people appear and post. It would be a great time to just say hi. You could even just log on and say hi and that you read the board.Shirley in Arkansas with BEB/Apraxia
Re: Introduce yourself
alll riight, Shirlay! I'm the one who just pops in now and then, but I never miss a thing that's posted here! I can't begin to tell you how much the BB has helped me, encouraged me, and educated me! I live in UPSTATE NY, in a rural-small town area. I am 66, mother of five adult children, all married, with 14 grandchildren, from 3 mos. to 17 yrs. And they all live close enough that we are one big. happy family! Also, my 88 yr.old (in reasonably good health, and a joy to have around ) mother finally just moved in with me, after me nagging her for some time-she lived alone in a big house 12 miles away from me I've been married for nearly 47 yrs. to my tall husband (I'm 5'2") and nobdsy believes me, but we never argue, We do occasionally agree to disagree, though. We're mostly "stay at home" people, because we like it here! My own children were all born within 6 yrs. and they all seemed to be in college at the same time, got married one right after the other, and the babies started coming! Three weddings and three babies in one year! And other stuff was happening during that time, and that's about the time I started noticing that I couldn't keep my eyes open...STRESS! It took me 8 yrs and 10 drs, or 10 yrs and 8 drs - don't remember which, now - this was about 1984. Of course a couple of them were shrinks. I was finally diagnosed by a neurologist with something I had never heard of - blepharospasm. He gave me the literature, I called Mary Lou, and the world opened up! I had a name for my crazy symptoms. I have been receiving BOTOX shotw for about 12 years - I go to a neurologist in Rochester, whom I have fallen in love with. (Just kidding, Art). I had a limited myectomy by Dr. Anderson in April of 1989, which helped some. It removed the "baggy" lids pretty much, but I still get shots - less than before the surgery (which I would recommend to anyone) I receive 6 shots, 25 units around each eye, every 8 weeks. Usually I can drive and read and do almost normal things in between. My husband spends most of his time (he's retired from IBM) in his extensive woodshop, making toys, bunk beds, small furniture, etc Occasionally he sells some things. I spend most of my time at the sewing machine, making quilts. I've been doing that for about 25 yrs.,and can't tell you how many I've made! My eyes work OK when I'm sewing (looking down).I use eye drops about once a day..my right eye doesn't close completely since the surgery. And my kids get a kick out of how I've become a "hacker"? since we went on-line a couple of years ago. MDH (being en IBM engineer--I'm sure you've heard all of the jokes!) knows all about HOW it works, but I just USE it...simply, I might add. Life gets frustrating now and then, but basically, I have it all! Just so I can see it. And I wish a Happy, Holy and Blessed Easter Season to everyone. Mary
Re: Introduce yourself
Gosh, Shirley, you've talked me into it!
By way of introduction, I'm Nikki Stilwell from Boise, Idaho where I was born and raised. Graduated from college in Missouri and returned to Idaho, where I belong. I'm 62 and retired from the corporate communications department in a state utilty company five years ago. One of the reasons I was so anxious to retire was my desire to spend time with my two granddaughters during their early years. They are now 8 and 6. I'm very close to the girls and live less than half a mile from their mother.
I have been diagnosed with blepharospasm for about two years ago. Had trouble with dry eyes two years prior to that. Like so may others, I went to several different doctors and then tried the internet looking up "dry eyes." I will always be thankful to Shanasy for taking the time to email me and suggest I check out the Foundation. When I started reading the Foundation's website information, I knew I had blepharospasm. I contacted them and they gave me the names of three area doctors -- eastern Idaho, Boise and SLC, which was Anderson.
I had three sessions of botox from the local doctor before going to Dr. Anderson in Salt Lake City. (My next door neighbor also has blepharospasm . . . we may be the only two people in the world with blepharospasm who live that close!! She has been going to Anderson since 1994.)
In December I had a limited myectomy with what I think is great success.
I still have some days when my eyes blink and just don't feel right, and other days I feel pretty normal.
Just this week Rose and I (we set our appointments at the same time) went to SLC. I had botox (last treatment was seven months ago) in the lower lids and my tear ducts were cauterized because my plugs keep working out. I need a little time to determine how all that will work out.
I don't know what the future holds, but I appreciate today.
I read the BB often and probably would be considered a "lurker" most of the time. I appreciate all the regulars, especially Shirley, because I've learned a lot from most of you. Enough Said.
Re: Introduce yourself
Nikki, Would you believe - I also have a neighbor who has blepharospasm. She lives approx. 3 houses away on the opposite side of the street. Also I have a friend at my church whose aunt has it also. Shes lives approx 2-3 miles away. Both these ladies are old (in their 80's- which really isn't old) The lady who lives up the strret from me has had the Botox injections only once. She stays home all the time. The other person goes to a neurologist for her Botox and she also doesn't leave her home because her face "looks terrible", her words.Nikki, I am so glad you posted and gave us your history. It helps to know each other what they are going through. Joyce in NC - Spring again today but rain is predicted for Easter Sunday.
Re: Introduce yourself
Hi Everyone, I haven't posted in a very long while, but I have been reading the introductions and have been amazed at how same/different everyone is. We have all gone through the frustration of mis-diagnosis, but as time goes by, we all become a bit more patient with those who don't really know or understand our predicament.I am 64, remarried to a wonderful man almost 2 yrs. (We were both widowed 9 yrs ago.) My BEB is triggered by stress with a capital "S". It had been lingering in the background for about 2 yrs before it went completely crazy in mid-2000. My husband (to-be at the time) was mis-diagnosed with Pancreatic Cancer. We had been together for about 4 yrs and I could see myself going through the pain and grief all over again. I guess it was too much for my system. I drove to and from the hospital every day for 3 weeks while Victor (Mr. Wonderful) was confined. Most of the time, I had one eye shut and was forcing open the other. I had no idea what was wrong and I concealed it from everyone. After all, I am supposed to be strong. After raising 4 kids, 4 dogs and helping with grandchildren, running a business, serving as officer with a service club, doing charity work and handling the grief after the sudden death of my first husband, no one thought I would have trouble handling anything. Boy, did I surprise everyone... not least of all myself!! Once my husband was correctly diagnosed as having a slow growing cancerous tumor which will not kill him, the stress was relieved somewhat, but the damage (to me) had already been done. My GP started me on anti-anxiety drugs to help me deal with my emotions, but she did not know why my eyes were clamping shut. A shrink also said she would use analysis and drugs, but did not know what was wrong. After trying self-help measures, such as hypnosis, and exercise, instead of improvement, I was getting worse. Stopped working completely and left the driving to Victor. My GP suggested I see my Opthamologist. The Optho guy knew right away what was wrong and gave me the Website address to read more about BEB and that's when I found the Bulletin Board. He started me on Botox right away. I have since changed to a Neurologist for my Botox injections. Finding a balance between drugs and Botox was the difficult part. This is where the patience comes in. Everything takes so long to affect the brain, because we are cautious about dosages, etc. Now that I have been talking so long, I can say that it appears that we are on the right track. I am now taking 150 mg of Effexor daily and get 40 units of Botox every 3 mo. very close to the eyes. Driving is still a problem. I have been using Tincture of Bilberry (as suggested by someone on the BB) daily to help with light sensitivity. Has been helping. I feel wonderful and can do so much more than even a year ago. My husband has been so supportive. I am no longer working, but I love doing needlework, furniture refinishing, sewing, and housekeeping (as long as it is my own home and no one moves anything). We thank God for our blessings and I really admire those people I have met here on the BEB BB, especially the young people with small children. God bless you all and have a nice Holiday! Marie in Florida where the living is Great!!
Re: BILBERRY
It might have been me, Marie, that told you about bilerry. I've been taking it for about 5 year's or so now. It took almost 2 before the herb really helped me - before that I could not be in the same room as a computer or tv - but after I could watch tv and use the computer (albeit I don't watch the computer when is moving a lot). I can also see a show now and really enjoy them (not the flashing kind). I still can't read a book but do feel my light sensitivty has improved a lot since taking bilberry. I saw the naturopath last week (when I was picking up my latest batch of bilberry tincture) and he said it can take a few year's to improve the system with something like this. I'm glad you find bilerryis helping you.June in Toronto (beb/meige)
Re: BILBERRY
Hi June, yes it was most likely you who mentioned Bilberry. When I asked my Opthomologist about it he said it was great and also to try Lutein as well as a protection from UV rays. I am now taking both. Good news to report MY EYES ARE OPEN!!!! Had my Botox injection on Wed and started feeling the effects about mid-Friday. The eyes have been open ever since. I even drove today .... for the first time in more than a year. Felt so very wonderful. I notice my eyes are drier, so I have been using the Fresh Tears for relief. Life is good. Thanks again for your support.
Re: Marie's Botox Worked!
That's great news, Marie, I'm so glad for you - enjoy the respite.June in Toronto (beb/meige) who is still coughing away and has ben since Dec.25/01. Going back to the doctor yet again tomorrow. The lard and nutmeg neck wrap that Catherine told me about works to keep the cough away at night - which is a relief.
Re: BILBERRYGood times have come
I am so pleased for you! Life is certainly looking up for you now!
Is Lutein a homeopathic rememdy? I am wondering where I should go to buy some to try too.
Can I ask if that was the first Botox you have had? I am looking forward to the day I can drive too......
Pippa,envious of course, but genuinely glad for you.
--modified by Pippa at Tue, Apr 02, 2002, 16:13:09
Re: BILBERRYGood times have come
Unlike Bilberry, Lutein comes in a capsule. I bought mine in a Health Food store, (20 mg each), but Centrum Silver (Multivitamins) has 250 mcg. Also, the company that makes contacts ( I forget the co Name) has a multi with Lutein. I have been taking the Bilberry in my juice and the Lutein in the a.m. with my vitamins.I have been getting Botox every 3 months since Sept 2000, but the last time was the first time the injections were put in the immediate vicinity of my eyes. ... the eye lids and beneath the eyes. My left eye was the worst and it had a perpetual blink. The only relief I could get was to keep it shut and there went my Peripheral (spelled right?) vision. It is hard to read with one eye. Any way, in my case the medication plays a big part. I am up to 150 mg of Effexor daily (1 cap) for my "anxiety". It keeps me centered. I still can enjoy the usual emotions, not like I'm in La-La Land. But little things don't bother me so much ... especially deadlines. If it gets done, fine, if not ... oh well! Of course, this could end tomorrow, but I hope not. It feels so good after all this time.
Thanks for all your kind words.
Marie ... Happy in Florida
Re: BILBERRY
Marie, I'm really glad to hear that your BOTOX is working well for you and those eyes are open. I know that it must have felt good to drive.
Use an eye ointment at night and keep on with those preservative-free drops through the day. :-)
I also take Bilberry and Lutein.Shirley in Arkansas with BEB/Apraxia
Re: BILBERRY
Thanks, Shirley, What ointment do you recommend?Marie, Happy to be alive in Florida
Re: Eye Ointments
Marie, there are many good eye ointments out there. I prefer Tears Naturale P.M.. There is also a Moisture Eyes PM and Lacrilube. Some are oilier than others so it is just a matter of personal preference. Some people can get by with using Genteal Gel at night rather than an ointment. There are also a number of generic brands on the market that I feel do just as good a job and are probably much cheaper. Most contain varying amounts of petrolatum and mineral oil.
It has also been suggested to put some petrolatum on and around your lids and this will be absorbed and help with a dry eye problem. I frequently do this at night and use a sleep mask as my eyes don't always completely close when I am asleep.
Enjoy your good eye days. Shirley in Arkansas
Re: Eye Ointments
Thanks, Shirley
Marie in Florida
Re: Quick response time :-)
Aren't you Johnny on the Spot? That was a three minute response time.
Not bad! :-)
--modified by Shirley-Arkansas-USA at Tue, Apr 02, 2002, 19:20:46
Re: Quick response time :-)
Who's timing? I don't usually spend time in the evenings on the Internet, but tonite I am here. How long was that? ;-)
Re: Introductions are in order
Hi Everyone,I've been on the bb a few times, but for those who don't know me, here goes: My name is Carol Brown, I live in Naselle, Washington down by the Columbia River. We live in a log cabin sort of tucked in the woods, It is very beautiful here. I live with my very tender and wonderful husband Bob, my great yellow lab Buck, and my beautiful cat Socks. I was diagnosed with beb/meige in 1996 after many years of utter frustration I know you can all relate to. I had a partial myectomy 3 years ago but continued with botox injections every three months. I go to a wonderful neuroligist who lives in Tacoma, WA (a 3-hour drive from here). I had my last botox injections last Tuesday and I have to say I went 7 months this time, the first time since I was diagnosed that I went that long. I can't explain this, but I think it's great. I told my doctor, whatever he did last time, do it again. I think the bb is wonderful. I have also learned a great deal from listening to all of you. It's nice to have a place to come to where people understand just what you are going through. By the way, can anyone if they experience an itching and/or burring of the eyes after they are injected? Carol Brown, beb/meige p.s. I forgot to mention I am 62 and on SSI
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