Re: Age of Onset of BEB
I know I'm not the youngest, that's for sure. I'm 59 (60 this year) and a definite diagnosis came in 1999. Prior to that, the light sensitivity, squinting, etc was noticed in late 80s early 90s. My eye problems seemed to esculate after a emergency corneal surgery in 92. The 3rd doctor I went to diagnosed it as BEB. In a way, I was one of the lucky ones cause it took less than a half a year to have it diagnosed after the problem was extremely heightened. But many years before that, it was just called bad light sensitivity, etc.
Are you going to keep a tally sheet, Shirley? If you do, maybe you can submit it to the BEBRF for the next newsletter.graceanne in port orchard
Re: info for newsletter
Graceanne, That's a good idea. I think that they have probably heard quite enough from me lately, but I'll certainly do it, if people would like for me to. It might be useful information for them, especially if a lot of people respond.
It wouldn't come out in the next newsletter, though. It is going to have conference information in it which takes up a lot of space. I asked Mary Lou Thompson, when I talked to her yesterday, if there could be a space provided for bb material in each newsletter. Even a small space and she said that it could not be done without adding an additional 4 pages to the newsletter which she said would be cost prohibitive. They will try to include something about the bulletin as often as they can as space permits. She said that they had been putting information in the newsletter about the bb, ie-the Cyber-Coffee and friends by Judy and the Top Ten that I had sent them. And she reminded me that the website is posted on the front page of each newsletter.
But, I will be happy to send them the information if we get enough responses.Shirley in AR.
Re: Age of Onset of BEB
Okay, I'll play. I was diagnosed 2 years ago when I was 50. I first started actively pursuing the "What's going on with my eyes?" question a year before that. I went the "allergy" and "dry eyes" route that many of us did. Actually my ophthalmologist, the very first time I described my symptoms, said "that sounds like blepharospasm, but I don't see it." He offered to refer me to someone who treated it if I wanted, but I had a lot of confidence in him (he had been our doctor over 25 years, since my daughter's strabismus surgery and had never steered me wrong) and he didn't "see it," so I passed. He had dry eyes himself and did my punctal cauterization, which did help the dry eyes. I then decided that I'd just have to live with it (whatever "it" was). My pcp mentioned Sjogren's Syndrome because I also had dry mouth, but really didn't think that was it either. No one ever mentioned my age as being a factor either way (I was a few months short of 50 at that time). Oddly enough the term "blepharospasm" stuck with me, and when (a year later) someone who has BEB told me he thought I might too, I went home and got on my computer. I found this site, decided the symptoms fit, and called my opthalmologist for the referral. As to when I first started having symptoms, that's a tough one. It crept up on me slowly. I've had dry eyes and light sensitivity as long as I can remember, just not to the degree that I did when I started looking for help. I had been holding one eye open to read late at night for at least a year. It was the excessive blinking when I drove that really pushed me to try to get something done about my eyes. Virginia in AL, snug in my new red BEBRF sweatshirt on this wet dreary day.
Re: Age of Onset of BEB
the rapid blinking drove me nuts too. i initially thought it was from years of wearing contact lenses.
Re: Age of Onset of BEB
I was diagnosed with beb at the age of 55 - I am 61 now. I was blinking as a child and into my early teens and was light sensitive even then. These symptoms stopped in my 20's, 30's and 40's and reappeared when I was 54. I had dry eyes, light sensitivity and was blinking again. I saw my GP, opthalmologist and neurologist who said it was "my age and dry eyes". I took a 3-month sabbatical and went to the U.K. with my husband to recoup/regroup from 3 female-type ops I had in about 16 months. I read about dystonia and beb in The Woman's Own Magazine whilst in the U.K. - I realised I had beb, so went to the London, U.K. clinic, got all the paperwork and diagnosed it myself. On my return to Toronto (after I decided to leave my job at the University of Toronto) I went to another neurologist and he diagnosed beb/meige straight away. I had botox injections within a week. I appealed my early-retirement decision at the university as I had been on the doctor's `books' as having eye problems (I would lose 2/3rds of my pension at age 55) and got disability pay - although I was denied for one year. I got botox injections every 6 months for 2 years, now get them every 4-5 months I get a lot of side effects (double vision, blurring and pain for about 3-4 weeks) until the eyes settle down.It will be interesting to read all the posts on this subject. June in Toronto who is not `blurred'for the 2nd day in a row - hooray - and today it was 9degC and the sun was shining!
--modified by June in Toronto at Tue, Apr 03, 2001, 21:31:13
Re: Age of Onset of BEB
i was denied disability over the phone with the curt reason that i received alimony. i accepted that as a reason until i finally got disability with the support of my church circle women friends a couple of years later as they had to drive me there. At that time i got my disaability from an extremely nice woman who told me that the alimony had nothing to do with it and that i should have come in years earlier to get it. talk about system screw-ups!
--modified by kathy at Wed, Apr 04, 2001, 10:47:13
Re: Age of Onset of BEB
What a nerve to deny you disability because you received alimony - as if that makes you rich, Kathy! Glad you got it sorted out eventually.June in Toronto
Re: Age of Onset of BEB
I become sensitive to light around 1995, I thought it was just me.Then in summer of 1999 I had alot of eye twitching. More than usual and by feb. 2000 my eyes were so sensitive I could not stop the sqinting. My face hurt and I was very stressed at work. I saw 6 Dr. and 5 Opthomoligist. I looked up twitching and came to find out I had Blep. according to the symtoms...... Oct. 2000 I saw a new Dr. and told him about this and he agreed with me. So it took eight mos. to get a dr's diagnosis. And I was 45 years old......
Re: Age of Onset of BEB
Shirley, I believe we had someone post who said she was 26 and a couple of others in their 30s. As for myself, it was officially diagnosed when I was about 62 (am now 66), but like Virginia, I have no idea how long I actually had it. Went for YEARS being told I had dry eye, allergies (which my longtime ophthalmologist suffered greatly from and had compassion for), and extreme photosensitivity. A couple of weeks ago I saw a picture of myself in the second grade and there I was, front row (so short!), squinting and frowning.Sally in North Idaho where I looked out the window at 2 inches of snow this morning and said April Fool is past!! It melted by mid-morning.
Re: Age of Onset of BEB
My difficulties started with photosensitivity in summer 97 when I was
51 yrs . I had just
gone through a wicked divorce and was working in full florescent lights
on a regular computer screen. Like many of you was treated for dry eyes, given several different eyeglass prescriptions including prism, denied
workmen's comp. etc. etc. I changed offices in early 99--they took out
the florescents for me and gave me an LCD computer screen to use which
did help some. My opthamologist at the HMO finally referred me to the
neurologist for possible botox injections. Didn't have my first injections until Feb. 00 until I could no longer stand the symptoms. Helped some.. Then I started developing
more spasming in my eyelids together with some meige/ Also about a year ago the breathing difficulties began and
that has been the main challenge to this day. About a year ago a dear
friend of mine found the BEBRF and I basically diagnosed myself.
When I last saw the neurologist a month ago, he confirmed blepharospasm, meige and diaphragmatic dystonia. I will be 55 in July of this year.
Joanne M. CA
Re: Age of Onset of BEB
I was diagnosed when iwas 66 i am now 69.I never had any symptons until one evening i was cooking dinner & my eye closed & woudlnot open. after a while i got scared & went to the hospital thought i had a stroke.When i got to the hospital both eyes were closing.I was there for 3-4 hours ran all kind of test& didnot know what was wrong,My Doctor sent me to a neurologist .I was diagnosed with in 2 weeks.Looking back i did have trouble watching tv & reading but never thought anything about it.I take botox every 2 months.I go for more shots the 11 of this month.Was very lucky to get diagnosed so guick. Colleen in IL we are getting some thunder storms.
Re: Age of Onset of BEB
For your beb to happen so suddenly, Colleen, it must have been so... scary for you - I can understand why you'd think you might have had a stroke. I'm glad you were diagnosed so quickly though. Do youl ike thunder storms? I kinda do!June in Toronto
Re: Age of Onset of BEB
my divorce was more than wicked and yes my Beb occured with problems , accompanying my divorce. i'm more than sure.
Re: Age of Onset of BEB
Early 50's, I guess. I was always light-sensitive, squinting, etc. Took me 10 drs. in eight years to get a diagnosis, from a neurologist. Mary
Re: Age of Onset of BEB/age added
I started having eye spasms when I was 38 it lasted a few months in the spring went away for the summer and came back in the fall. During that time there were occasions where my face would get stiff and freeze.
The following spring my eyes hurt in sunlight, then came the involuntary
eye closure, then the excessive blinking and the eye pain.
Then came the pulling down of my neck, last were the facial spasms.
I was diagnosed when I was 40. I will be 48 next month.
Much of the time was wasted waiting to get doctor's appointments.
Also took time to go for blood tests, MRI's, etc. Age was not mentioned, I only heard about age from what I read.
Mindy in NY
--modified by Mindy at Wed, Apr 04, 2001, 14:46:09
Re: Age of Onset of BEB
I noticed an eye twitch or tic when I was 65, seen a neuro. he said I had Facial Myokymia, prescibed phenabarbitol,made me sleepy, quite taking it.2 yrs later seen a woman Dr.of optometry, she said spasms and said Botox and offered to send me to a plastic surgeon for shots, read up on Botox and it scared me, also was sure my HMO would not pay for it, I continued to get worse in my left eye, till I could barely see out of it.When I was 70 went with my hubby as he seen his ophthalmologist, as soon as seen me he said ,Blepharospasms, "I can give you Botox injections to help you",A few days later I had my first ones, After the side effects had worn off, it was like a miracle, I was seeing with 2 eyes, have had them 4 more times. Got a computer in Dec. 2000, and went hunting for a site like this, it took me a while to do it , as I had no computer knowledge at all.Glad I found all of you. Edith in Fl. where it was 82 today
Re: Age of Onset of BEB
I started to notice dry eyes when I first moved to Calgary in 1996. I was 45. It is very dry here so I was told I had extremely dry eyes and to use drops. Then puntal plugs and 3 doctors later found out I had beb. Had surgery last April. Things are pretty good. Just had botox last week
Now that I think about it my mom use to say "What are you squinting for" and I would have my vision checked and everything was always ok.
That was a long time ago! (and often)
Re: Age of Onset of BEB
I started getting symptoms July 1999 the blinking got worse
during the fall. I was finally diagnosed in March 2000 by an opthamologist. Before being diagnosed I kept going to my family doctor
but he insist it was allergies and he kept prescribing medication. He then checked my thyroid which came back normal. I got my first injections in March 2000 soon after being diagnosed. The 2nd and 3rd time they did not work for long. I was on disability for 6 months but I have improved so I am now back at work. I had my botox injections in march which ehelped me. I've gone between injections for 4 months. hopefully i will not need them for another 4 months.
Priscilla
Re: Age of Onset of BEB
I developed spasmodic torticollis first. This began when I was about 36 but went undiagnosed for almost 10 years, even after being referred to about 8 different doctors, most of them neurologists or neurosurgeons. It wasn't until two years after having fusion surgery that I first heard the term dystonia. I was then 46. A year later I began having difficulty with my jaw and my eyes followed about 6 months after that at age 48. My symptoms began somewhat gradually over a few months with dry eye, light sensitivity, and spasms. I had great difficulty keeping my eyes open to read and was afraid to drive except for first thing in the morning when I would make a quick 10 minute drive to grocery store or Wal-Mart. I was approved for disability from my teaching job and I have been getting botox injections every three months in both my neck and eyes for almost two years now. I had been put on a multitude of medicines over those 10 years, sometimes 3 or 4 different ones at a time. It wasn't until I found the dystonia bulletin board that I almost fainted when I saw 10 of those prescription drugs listed on the NO-NO drug list for causing or worsening dystonia. I now refuse to use anything other than botox.
I have some side effects from botox, but it does help for about 6-8 weeks, especially with pain in my neck muscles. I've only had it 3 times in my eyes, so still assessing duration and level of improvement, which seems to have varied greatly each of those three times.Shar in MA where I just found first daffodil poking out of ground this morning.
Re: Age of Onset of BEB
hi folks my vision started goin bad at age 30 7 yrs after a bout with encephalitis.. hugs to all ..john
Re: Age of Onset of BEB
As a teenager I had excessive blinking. I have had BEB almost my whole life but it is a mild case. My eyes do not clamp shut, just blink uncontrollably. Botox has helped a lot. I am now 60 and they haven't gotten a whole lot worse for which I am thankful. I was diagnosed at age 50 after seeing a clipping in the newspaper about BEB and how it often is misdiagnosed and is really a neurological problem.It was so reassuring to know that this condition really had a name, I was not the only one with it and there was help!
Re: Age of Onset of BEB
Thanks for posing the question! I read in the responses that someone remembered a person being 26 - THAT UNFORTUNATELY WOULD BE ME. I noticed at 26 in 1995 that I had trouble holding my eyes open, especially when driving. My lids would just close. I had just had my first baby and gone back to work as a CPA and thought I was tired. After a few months the spasms and severe squeezing began. I went to my ob since it started after my daughter was born. I thought it was hormones causing headaches which were causing me to squint. He sent me to a neurologist. While waiting for my appointment my conditioned worsened even further. Luckily I have a husband who is a firefighter/paramedic/RN and he called the neuro and told them I confessed to not wanting to live and she worked me in the next day and diagnosed me immediately with BEB. She still treats my Meige with Klonopin and Botox but I now see an ophth surgeon every 2 months for the max dose of Botox in my eyes. My first injections with the neuro didn't work at all so one month later I was injected by an ophth. I had ptosis each time in my left eye, blurred vision, and he was just plain mean. He never gave me the number to the foundation which I found rather "amusing" since he was the guest speaker at our only support group meeting in 10 years. I stood in the waiting room crying holding my 18 month old baby begging for help and they finally gave me a phone number to call. My current doctor is great. I never have any side effects and he is very compassionate. He agreed with the research of myself and my ob that Botox would not circulate and therefore we had another baby with Botox injections in 1998. Although my condition worsed after her birth, I now have 2 healthy girls and they are the light of my life. I just turned 32, am "retired" from my CPA job, and am a full-time mom and wife. Leaving my job and not having to drive 2 hours per day in Dallas traffic has helped and I am able to be a mom for the first time in a LONG TIME. Sorry this is so long but it is actually theraputic to tell my story.
--modified by Kelly Saffell at Wed, Apr 04, 2001, 10:04:28
Re: Age of Onset of BEB
i was diagnosed at age 39. i am now 49. The leader of the only support group i was ever able to attend said they had me down as having developed it at age 29, i will never know how that happened.
Re: Age of Onset of BEB
My symptoms started at age 60. I was diagnosed at age 63.
I am now 66 and will never be as young as I am today. :-)Christel in Ca. where I have the heater going.
Re: Age of Onset of BEB
Hi Christel, We have the heater on at the office today as well. Where
in Calif. do you live? I'm in San Diego. :<) Joanne M. CA
Re: Age of Onset of BEB
Joanne, I live about 50 miles NE of Los Angeles in the high desert.
Christel who is enjoying the cool temps, grey sky and rain forecast.
Re: Age of Onset of BEB
This is an interesting and important thread, and I do hope Shirley keeps track of the ages at onset, etc. I first noticed dry eyes and light sensitivity in my early twenties when I tried to wear contact lenses. It became worse--the contacts were unbearable--when I became pregnant at twenty-four. I think hormones had something to do with it. I don't remember having any other serious eye problems until about fifteen years later when I had two bouts of "pink eye" (the eyes were actually bright red) treated with steroid drops. My eyesight also became blurry and I was told that I needed bifocals. ("Far-sighted plus forty equals bifocals," in the memorable if not exactly tactful phrasing of the optometrist I saw at the time.) The second bout of "pink eye" was followed by intense light sensitivity and forced eye closing, which of course was very scary. I don't even remember a blinking phase. I was 41 at the time. (I'll turn 52 on tax day so it's been almost eleven years.) Of course I went through the usual dry eyes diagnosis but "fortunately" my head started turning to the right at about the same time and I ended up seeing a neurologist to find out what that was all about. I've already mentioned how I walked in touching my cheek to keep my head from turning and wearing a sun visor and wraparound sun glasses over my regular glasses because light of any kind hurt my eyes. The neuro took one look at me and said, "I know what's wrong with you." And so on. I don't want to get side-tracked onto treatment or present symptoms in this thread. I don't know whether the original dry eyes had anything to do with the later onset of BEB. I think there's a connection but I don't know exactly what. It might have been a preliminary stage of BEB waiting for some other trigger (medication, unbearable stress that I don't want to talk about, a minor car accident I was in the year before). I don't think dry eyes directly cause BEB, but I think they're a factor, somehow. Part of the equation, so to speak, but I don't know how it all adds up. (Sorry about the math metaphor; I'm really quite serious about all this.) Carol in Tucson (which is how I'll be signing my name when I change my registration after I stop procrastinating). Now June, don't scold me; I'm waiting to see whether I hear from the moderators on the other board. I did try to e-mail them. Okay? :-) Carol
Re: Age of Onset of BEB/CAROL
I wouldn't dream of `scolding you' - after all you are younger than me and I MUST SET A GOOD EXAMPLE - right:-)June in Toronto who likes to read `Carol in Tucson'because she can picture her being there!
Re: Age of Onset of BEB/CAROL
June ... I also like to read where people are from. That has more meaning for me than a last name as, like you said you do, I picture them being there.Any more good jokes to send to me? Sally in beautiful North Idaho
Thanks, June
Hi, June! You really did motivate me to stop procrastinating and just do it! Change my log-in name, I mean. I really do feel safer now.Affectionately,
Carol
Age
Age of onset: Just prior to 50th. BD., now 54.Correct Dx: 4 different doctors, about 5 months. Botox every 3 months 100 units around eyes
100 units divided between TMJ areas
100 units in neck Meds: Klonopin & Neurontin Judy
Re: Age
I have TMJ as well and get injections in my jaw every three months for Meige/TMJ or whatever else you want to call it. My left jaw hurts all the time and my neck muscles feel like pencils. Can you give me more info on where/how you get your injections? I only get 20 units in each jaw right now with a total of 6 shots and none in my neck. ANY help would be appreciated.
Botox sites for Meige & ST
Kelly:I would think that everyone may have different sites for their shots because not even I have the same muscle spasms active each time. My jaw is often dislocated in the morning when I wake up. Those shots go right in front of each ear where the TMJ joint hinges. So far the doctor has tried shots up the side of my neck (because one muscle from the collar bone to the jaw would spazz and burn). Now he's been trying them across the back of my neck. We're still experimenting because my head still jerks and tilts to the right at times. Why don't you try e-mailing me privately and describe exactly what moves or hurts in your face, jaw and neck. Hang it there, it's not a picnic for sure, Judy
blkmn36@earthlink.net
Re: Age of Onset of BEB
I've been reading everyones'post about age of onset and your stories. Like Kelly mentioned, they are therapeutic to tell and to read. Because of my newsletter article which told my story, I'm not going to be redundant and repeat. Shirley knows more about me than I do cause she has a better memory and never lets me forget anything! But she'll give me a lashing with a wet noodle if I don't join in the chorus here. I'm 50(which is younger than Shirley), was diagnosed at age 48, but can remember squinting with my head cocked in every picture I had made in childhood outdoors. I had worn contacts off and on since I was 17 and had worn the disposable that I slept in for 15 years. I also have Fibromyalgia, which is also a brain disorder and makes every muscle in my body sore (even my scalp) but is much worse in my neck and shoulders, thumbs and right hip. I had taken Elavil for years for FMS.
I have had chronic sinusitis all my life and became sensitive to perfumes, dyes, cleaning solutions, and hospital disinfectant odors, gas fumes, etc. after high school and the sensitivity became worse with each passing year. That's my story and hope Shirley is happy I jumped in .....did I jump high enough??
Delaine in TN who was able to drive today to get a massage and just woke up from a nap, but the Klonopin gives me CRAZY DREAMS.
Re: Age of Onset of BEB
Hi Y'all,
I was approx 60 years old when I became very light sensitive, so much so that when I went out into the sun my eyes would close. I thought it was because in the 2 years preceeding that I had begun to have migraine headaches and was very light & sound sensitive. People noticed that my eyes looked "sleepy" because they wanted to droop. I noticed that when I drove my eyes would close. I asked my family doctor "why do my eyes want to close"? I felt like I had magnets in my lids that just pulled my eyes down. I don't remember if I blinked or not. He told me to see an ophthalmologist and the one I saw said he could not find anything wrong with my eyes. I was probably light sensitive because I had blue eyes. After a period of time and several more doctors I finally found one who gave this "problem" a name and in June 1998 I saw a doctor who gave me the Botox injections. I was 62 at that time.I am now 64 years young, but this disease is making me old. Joyce in NC where the weather is suppose to get warmer tomorrow. Chilly and overcast today. I want Spring to get here SOON.
Re: Age of Onset of BEB
Delaine,
The Klonopin gave me crazy dreams at first, too. Now I only take it in the morning and early afternoon. And I usually don't have time for naps so it doesn't bother me during the day (although I took a nap today - it felt good to curl up & snooze during a brief rain storm).Most of my childhood pictures have my eyes closed. Was that a clue? Virginia in AL, tired of April showers (remind me I said that sometime in August)
Re: Ya did good, Delaine
Gosh Delaine, you make me sound so abusive. Next thing you know, you'll be referring to be as the drill Sergeant or dictator. Come to think of it, in one of my yearly nursing appraisals when I was the charge nurse on an orthopedic rehab unit, my supervisor said that someone had referred to me as being dictatorial. I know who it was as she wouldn't do her work and I was constantly having to tell her what to do. She would just sit and read magazines and make personal phone calls and not answer the call lights. She never even wore a watch and was always asking me what time it was. There was a clock right outside the nurses station but she was to lazy to even get up. Ooops, side-tracked again.
I was always squinting as a child, too. Almost all my pictures have me squinting or holding my hand up over my eyes. I remember my parents telling me to put my hand down so that they could see my face. For several years before I developed full blown BEB, people would often tell me that my eyes looked tired and had I gotten enough rest.
I think that there are little hints or precursors of things to come in some individuals. It may genetically be there and just waiting for some trigger to set it off.Shirley in AR.who refuses to apologize for being bossy.
Re: Ya did good, Delaine
All of these descriptions are a little frightening to me. I've had/have so many of these things. Light sensitivity, droopy lids, dry eye, sore, aching muscles and the list goes on. I don't have blinking or squeezing. I have so many health problems, that I'm not going to anticipate any more. I'm 54,have had health problems most of my life and I always squinted in my childhood pictures too. I have squinty eyes anyway, so when I squint it's really noticeable. I'm a nervous/must get things done person, bit my nails all my life until a few months ago. Now I'm back at it part time. Many of the posts I've read describes me quite well.
Evelyn
--modified by Evelyn at Wed, Apr 04, 2001, 23:16:21
Re: Squinting
I also have childhood pictures of me squinting or holding my hand up over my eyes. Who knows maybe it has something to do with beb???
Re: Age of Onset of BEB
Hi!I've been reading all the posts on age so thought I'd tell my story. My problem started in the middle of Sept. 2000 with blinking eyes, especially while driving. By October 5th I was no longer driving or working. I was diagnosed by the middle of October after seeing 7 doctors, and was hypnotised on November 1st. Within two weeks I was back to driving and being able to control my eyes and keep them open. My symptoms since have been pretty much gone. I spasm now only late at night when I'm tired and should be asleep anyway. STRESS was the leading factor that brought all this on. I just attended my first Support Group Meeting in Oak Park, Illinois on Sunday, April 1st. I am 38 years old. Beth in Illinois, where it's overcast, but supposedly hitting 60 degrees today.
Re: Age of Onset of BEB
- Onset at age 49; now 57
- First symptoms - difficulty driving on sunny day even with sunglasses
- First general ophthalmologist wanted to take a piece out of my eyelid
- Second general ophthalmologist diagnosed blepharitis and dry eye
- Three prominent corneal specialists (2 in Canada, 1 in US) diagnosed problem as only dry eye
- My insistence that an irritation-based phenomenon could not be solely responsible for something which started and stopped so suddenly got me referred to a neurologist and then a neuro-ophthalmologist who diagnosed BEB
- Onset to diagnosis took a full year and would have taken much longer had I not been a very aggressive patient who shopped around
- Current treatment: 75U Botox every 2.5 months; 16 sites around eyes and two on the nose (to get rid of that rabbity look)
Shirley, when you collate this data, you should break it down by calendar year of onset because I am sure you will find people getting a correct diagnosis more quickly now than eight years ago (My Botox doctor tells me that one of the corneal specialists who missed my BEB now sends him patients regularly).
Re: Age of Onset of BEB
Blephoraspasm onset at age 55 (May, 1995) I am now 61 (6 loverly years). First sign of something wrong: My eye LASHES were SENSITIVE to a mascarra brush. Never had 'dry eye' until first Botox shots. That was enough to put me off for about 4 years, finally started them up again about a year ago. Consistently get ptosis, in alternating eyes. I get 30 units of Botox every 3 months in three different places around each eye. Don't take any meds. I was diagnosed very quickly after seeing only one opthomologist who sent me to a neurologist. A young guy who had a book in his hands, and had obviously done some research. His diagnosis was right (darn it). He told me about the Dystonia Foundation also. As I left the office he called a bunch of other doctors to look at me, that was loverly too . . . none of them had seen it before (1995).
Re:Are you New to our BB?
Hi Caroline,
Are you new to our bulletin board or have I just lost my mind? My memory, at times, is shot. (although others don't believe that) Welcome, if you are new.Shirley in AR.
Re: Good to Hear Your Story Bob
Hi Bob, of course I've heard about you - from Shirley Morris, Canadian Rep - Dystonia, Toronto. Now I know "your story" - thanks for everything you have done for Dystonia and BEBRF.June in Toronto
Re: Age of Onset of BEB
I was diagnosed at age 60. My symptoms started in March and I was diagnosed in August. At first I thought it was my gas perm. contact lenses causing my eye problems. After three contact change outs, I went to an ophtholmologist and he said it was dry eyes and to stop wearing contact. The glasses with bifocals, made me worse. I went to my GP and she put me on valuum. I had been through a very stressful two years. Lost both my parents and my youngest son was going through a nasty divorce and child custody suit. He lives 400 miles away so I wasn't able to help him much with the baby. The valuum didn't help and my eyes were sqeezed shut most of the time. I couldn't drive, read or even walk without stumbling over things and actually fell down in a restuarant. I had about one hour first thing in the morning when I could see to pay bills, sweep my floor, or just function normally. Finally in desperation, I went to a neurologist, told him my symptoms and he immediately recognized them as BEB, but couldn't give me the injections, so sent me to the University of Utah where my condition was confirmed and they started my shots. After three weeks and no relieve,I went back for a larger dose and in three weeks, I finally got
relieve.
That was in August. I later found an ophtholmologist in Casper, Wy who gives me the shots every three to four months. He is wonderful and get good results with no complications thus far.
I am on no meds, however I take a benedryl at night before I go to bed. When my shots start wearing off I get a sinus like headache especially around my left eye.
I want to thank everyone who posts on here. Reading all your comments, has helped me feel confident that my diagnosis is correct, as I can relate to most of your drama.
Connie in Wyoming.
Re: Age of Onset of BEB
G'dayi was 39 at onset two years ago. have traveled many paths since then -throgh acupuncture, rivotril, valium etc. Currently fairly stable on Isoptin 240mg daily - with the occasional relapse which is manageable with the acupuncture. Am currently going through the hoops with numbness down the left side and general lethargy which they are putting down to some sort of "immune system disorder". Off to another "specialist" in May to see if they have any bright ideas. Scott
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