New Guy in Town


Posted by Ken C. ģ , Mar 19,2002,10:51   Archive
Howdy Yall! Let me first say how bittersweet it was to find this BB. Sweet to have a broad knowledge base to seek information on such a rare and strange disease, bitter in that BEB is truly what I have and that there is no known cure, only a treatment for the symptoms. Before I get into all the history and the boring stuff, I want to ask a few questions about BEB, moreover compare mine to yours. I also want to apologize for any spelling or grammatical errors. Iím sure there are several but hey, none of us are perfect eh?

Symptoms:

My symptoms initially started with a rapid blinking and dry eye feeling in the summer of í99, then later progressed very slowly to where I would start tilting my head back while I was driving.

After waking, my condition is almost unnoticeable, but as soon as I go across the street to drop the kids off for daycare, itís as though the sun is ten times brighter than usual.

I can watch TV most of the time but if I get excited (watching the Dallas Stars score a goal) my eyes will tighten up and squint.

Iím still driving but only short distances and when doing so I have to put my head up against the headrest cocked back about 40 degrees along with tilting my seat back.(So I can look through the slits of my eyes)

While talking to someone (except my doctor) my eyes will slowly start to close and in order to look them in the eye I may start tilting my head back. Or I may just look at the ground because that is the most comfortable way to converse.

I can read magazines, do puzzles, play cards or work close quarters. But put me in a car on a sunny day and itís all over. Itís fascinating how I can pull up to a stoplight and my condition will almost be totally gone. Get moving again and down go the lids. I would really like to know if this happens to anyone else.

As many of you know itís very difficult to describe this to your family much less to Tom Dick and Harry who ask, ďwhy is your head cocked back like that? Does you neck hurt?Ē

I think I have tried to compensate for this (BEB) by the head tilting and now its catching up with me with neck pain and some headaches. In addition to all this I think I may be showing sign of Meiges. Iím not sure how but my breathing has been affected by trying to open my eyes as though Iím lifting heavy weights. Maybe those of you with Meiges can tell me more about it. I know now I have developed certain aspects like my tongue will squirm around and I end up opening my mouth occasionally while Iím driving. I think Iím trying to stretch my face to get my eyes open. Sometimes it feels like Iím trying to eject my molars from my lower jaw. I can look in the mirror and raise my brow as though to open my eyes but my lids will just sit there. Only after totally relaxing my face and concentrating can I manipulate them slightly. There may be a degree of Apraxia involved as well.

Whatís up Doc?

The bad news is I have had a run of bad luck with doctors:

(Insert long paragraph here of BS and mis-diagnosis during 2 long years that I deleted for your sanity) Long story short is I need a good doctor in my area that, A) Can do Botox injections and B) Doesnít mind filling out my FMLA paperwork and C) Someone who is pro-patient. Seems simple doesnít it?

I am scheduled to see a Nuero/Opth at UTSW medical school in April and also have an opportunity to go see Dr.Jankovic in Houston. I was wondering if anyone had seen him. Several Doctors here in Dallas have mentioned him. I must also mention I went to see a doctor on the list from this BB who not only did not do Botox as I was told, he was, ah hell, just a waste of time. Iíll leave that for another post.

Bio:

I am a 39 year old male in Ft. Worth TX. (Iím really in Flower Mound, which is closer to Dallas, but I like to call Ft. Worth my homeÖYee Haw!) I have 2 beautiful girls ages 3 and 6 and a beautiful home with a pool in a very nice neighborhood. Iím 9 minutes from the airport were I work for a large airline that so far has been able to accommodate my condition to which I am very grateful. As I mentioned our daycare is our neighbor right across the street in our cul-de-sack, So there is no driving involved there, or with my six year old who attends the elementary school just built a block from our house. We traded our white picket fence for an Iron one. ; >) Again, I have so much to be thankful for.

OK enough is enough. For sticking with me though, I give you a program that reads from your screen that you cut and paste into. Itís really easy and itís also free. However, the voices in the full paid version are amazingly real. You can download the free version and hear samples of the pay version at www.readplease.com. I only have the free version so I havenít really evaluated the full one. Good luck to all.

You can reach me at texkabob at H*tmail.com . OR AOL instant messenger TEXKABOB, but NOT at texkabob at AOL.com

Ken C. in Texas
Related link: http://www.readplease.com




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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by Kelly Saffell ģ , Mar 19,2002,12:08 Top of Thread Archive
Welcome to the board from Texas. I live in Allen, north of Dallas. I'm 33 years old and have had beb for almost 7 years. I have 2 daughters, Morgan is 6 1/2 and Cory just turned 4. Your story sounded very familiar. I drive with my head tilted back (Morgan yelled at me one day because she thought I was asleep). I only drive 3-5 miles max but I can get Cory to preschool, go to the elementary to help in Morgan's class (she rides the bus), grocery shop and go to Target. I "retired" from my job as a CPA just over 2 years ago and have been on disability since. I have meige as well. My jaw clenches shut, my throat spasms and sometimes the back of my tongue spasms. Dr. Jankovic in Houston is supposed to be an excellent doctor. I've spoken with 2 Dallas patients that go to Houston regularly to see him. There are also some good doctors here in the area. The foundation can provide you with a list. I am the area coordinator and I am holding a support group meeting on Sat at Presby Hospital of Dallas, main bldg, southeast conference room at 1:00. I'll have doctor info and other literature. The president of the foundation, the state coordinator and our botox rep will be there as well. My email is ksaffell@aol.com.

Kelly in Dallas




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Re: New Guy in Town

Re : Re: New Guy in Town --- Kelly Saffell
Posted by Ken C. ģ , Mar 19,2002,13:56 Top of Thread Archive
Kelly, I would like to know the names of the doctors you recommend because I think the one I am seeing in Apr does not do Botox. I also read that one of your doctors was very painful, Im wondering if that was Dr. Watts. I almost passed out and left with a nice big black eye. I'm, definitely going to try to make it to the meeting, I have to take off of work though. Thanks for the help! Ken

--modified by Ken C. at Tue, Mar 19, 2002, 13:58:14




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Re: New Guy in Town

Re : Re: New Guy in Town --- Ken C.
Posted by Kelly Saffell ģ , Mar 19,2002,14:53 Top of Thread Archive
She was my diagnosing physician and gave me my first set of botox. I was solid purple for weeks and they hurt sooooooooooooo bad. She still prescribes meds but I don't let her go near my eyes. Dr. Merritt is my primary doctor. I do have a list of several doctors. If you don't make the meeting, then I will put them in the mail to you on Monday. Hope to see you there. FYI, in the future I plan to hold meetings every 3 months on Sun afternoons. With kids involved in sports, Saturday meetings are tough!
Kelly



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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by June in Toronto ģ (June Floyd,June in Toronto), Mar 19,2002,12:54 Top of Thread Archive
Hi Ken, welcome to the beb bb. Sorry to hear you have this disease but you've come to a good place to share and perhaps learn some new things.

I've had beb and meige for about 7 years now - am a lot older than you - but still had to quit my job at the university because of it. Like you, I squint with head tilted to watch tv and sometimes its easier to talk to people's feet than look at their face! When I do an exercise class, within minutes, I can look at the ceiling - its a strange disease! I can drive short distances but never at night with the lights. My meige isn't as pronounced perhaps but I get the twitching, but so far not the tongue thrusting and breathing problems that I know others have.

You sound like you have a lovely family. I haven't tried your link yet - I'm not so computer savy - mind you I know how to cut and paste. Maybe another day if my eyes are better I'll try it. I met Dr.Jankovich at a conference - he has a great reputation.

Good luck -talkto you later.

June in Toronto (beb/meige)




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Re: New Guy in Town

Re : Re: New Guy in Town --- June in Toronto
Posted by Ken C. ģ , Mar 19,2002,15:55 Top of Thread Archive
Thanks for the info, Hopefully I can keep working for a while, we will just have to wait and see. I'm full blown now, as I havenít had a Botox inj since Nov. I wanted the Doctors to see me in my worst condition. It's pretty rough but Iím making it. Funny how itís different for everyone, the lights donít bother me at night.

>>When I do an exercise class, within minutes, I can look at the ceiling - its a strange disease

I know how you feel, I can go outside and mow the yard but when the neighbor comes over to chat, there they goÖ..




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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by Dee in OR ģ , Mar 19,2002,13:03 Top of Thread Archive
Hi Ken,

Welcome to the BEB BB. We are a friendly bunch here. Hey, did you know that the BEBRF Conference is in Houston, August 23-25? They are great fun and very educational.

Dee in OR




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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by Lynn Yarbrough ģ , Mar 19,2002,13:44 Top of Thread Archive
Hi, Ken from an ex-Texan (born in Ft. Worth MANY years ago).

>... I want to ask a few questions about BEB, moreover compare mine to yours. I also want to apologize for any spelling or grammatical errors. Iím sure there are several but hey, none of us are perfect eh?<

You got that right!

>... I would start tilting my head back while I was driving.<

Been there, done that. A caution: you are going to have to struggle to continue driving, unless, like me, you have good success with BOTOX. My guess is that you are already in a liable condition: If you have an accident, it may be your fault for driving with a known limitation. Driving in our condition is only possible because adrenalin eases that task. But you can't depend on that; it just happens a lot, and one day it won't.

>... as soon as I go across the street to drop the kids off for daycare, itís as though the sun is ten times brighter than usual.<

That's because of the design of our eyes. When normal people blink (for about 1/20 sec.) the iris does not open, but when you and I blink (for about 2 sec.) the iris opens fully while the lids are closed, then when the lids reopen, the retina is bathed in bright light until the iris can close again.

>I can watch TV most of the time but if I get excited (watching the Dallas Stars score a goal) my eyes will tighten up and squint.<

Most of our trouble is agravated by STRESS. Liking watching a bunch of losers play badly. :-) Seriously, my advice to you is to reduce your stress level big-time, and soon. It makes all the difference in the world.

>... I can read magazines, do puzzles, play cards or work close quarters. But put me in a car on a sunny day and itís all over. Itís fascinating how I can pull up to a stoplight and my condition will almost be totally gone. Get moving again and down go the lids. I would really like to know if this happens to anyone else.<

I think it happens to almost everyone here. It's the stress/adrenaline thing again.

>As many of you know itís very difficult to describe this to your family much less to Tom Dick and Harry who ask, ďwhy is your head cocked back like that? Does you neck hurt?Ē <

I tell people, "I have a rare neurological condition that makes my eyelids spasm. It's a pain, but it's not really serious, although it really looks wierd. Thanks for your concern, but it's OK." If/when the Botox takes over, the neck-twisting should stop (unless you really have Meige).

STRESS is your enemy. We are your friends; we've been where you are.

--- Lynn




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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by Sally - in - Idaho ģ , Mar 19,2002,14:53 Top of Thread Archive
Howdy to you, Ken! Glad you found us and dropped in ... thanks for sharing as much as you did. It's always interesting to know some of a person's background.

You've received good answers above and I'm sure you'll get a lot from Kelly's support group; sure wish there were such a thing near me!

I can say "ditto" to many of the symptoms and tricks you've mentioned. I have to drive with my head tilted and look through squints. We live in quite a rural area and I only drive very limited distances where I know the route by heart. Still, I have a headache from squinting when I get home.

I give the same response to inquiring people as Lynn does. A "neurological disorder" seems more explanatory than a "vision problem," because our vision is acutally okay in most instances ... if our stubborn eyelids would just stay open!

Good luck to you and do drop in often.

Sally in North Idaho BEB/Meige




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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by Shirley-Arkansas-USA ģ , Mar 19,2002,16:15 Top of Thread Archive
Hi Ken and welcome to the bulletin board. Your symptoms sound pretty typical of a lot of us. I've heard others mention driving with their heads tilted back many times. I'm not able to do that. The eyes just go ahead and close if I try. It is only a rare occasion that I can actually drive.
In the early days of my BEB, my eyes were much better in the morning and worsened as the day went on. I would wake up and begin my day almost symptom-free and then the eye closing would start up and it was downhill from there. Now, I wake up with symptoms in full swing. Some days it makes it tough to even want to get up and face the day.

My eyes usually stay open as long as I am the one that is doing the talking but they close if someone is talking to me.

The symptoms are strange and quirky and they are a little different for all of us. We all have "triggers" that may be a little different and these may change for you as time goes on.

It is really important to find a doctor that is very knowledgeable about Blepharospasm and that you can work with. Sorry about your bad experience. I've also had a doctor that I wouldn't recommend to anyone.

Do try and go to the yearly conference that is being held in Houston this year. You will meet a lot of people with the disorder and gain invaluable insight into treatment options and what is being done to research BEB.

Again welcome.
Shirley in Arkansas with BEB/Apraxia/post upper limited myectomy




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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by Pippa ģ , Mar 19,2002,16:40 Top of Thread Archive
Hello Ken! I too recognise most of your symptoms and am fairly new to this as i was only diagnosed just before Christmas.
In May last year I felt the first "fluttering" of my eyes and thought I had an allergy as this is when the pollen comes out here from daffodils. (I am from the Highlands of Scotland in the UK)
However this progressed to rapid blinking and driving just like you do with my head at 40 degrees and lids almost totally closed, and then eventually to lid closures with the top lid pressing down very hard on the eyeball. For me this lasts only about 10 seconds up to about 30 seconds but as soon as they "let go" they sometimes immediately just repeat the spasm again....and again. This repetition is usually when i am stressed because of something (being very tired)or for example fluorescent lighting in a superstore, or watching TV.
Actually i do try to watch my favourite programmes on TV sometimes but find I am squinting and having to keep looking away and back again. (And then i find my concntration goes and when i look back i find i have missed half of the programme!)
i wondered why i had no problem with the computer screen but i reckon it is because it is not moving. I tend to be absolutely fine in my own home when nobody is around except my husband. I do find that when i am walking, even in my own garden that the movement of air sometimes triggers off the spasm.
Actually that is not so true now. i have just had my first Botox injections and i have improved somewhat so that I don't seem to have the spasms so much as just lid closures. The lids feel as though they are zipped up, but not painful any more, and i just have to wait until they release themselves, and then walk on. Sometimes one release before the other. Is that "normal"? I don't know if that is apraxia or not. Anyone know?
Anyway, I have a long stick now for when i am out walking my dog along familiar streets here, and use it to "sweep" the pavement in front of me to "see" if there is any reason why i shouldn't just carry on walking until release comes. i am not up to crossing busy roads just yet. Nor will i go into supermarkets unless someone is with me somewhere in the shop. If i do have multiple spasms and am functionally blind for longer than I can keep my cool...ie ending up hving a panic attack (and THAT just makes it much much worse.)at last i know i will have someone to guide me back. I have been in that situation. My companions had thought i was fine as i had been fine all afternoon and had gone back to the car without me, little realising that i was standing blind to all intents and purpose and thoroughly frightened. i will never put myself ino that position again.
I have found out through this site how important it is to keep the eyes lubricated at all times.(and especially after you get the Botox which seems to dry the eyes) If I forget to keep putting in the gel as much as usual, i am made very aware of it that night by having the spasms on and off for most of the night...and oh how wearying that is!
I kept going to my doctor and kept saying "this isn't just dry eyes" to them when they said "try another lubricant and keep perservering" until eventually one of them took the time to really listen and write down what i was saying. and then eventully said that he was referring me to an Opthalmic Consultant at our local hospital. the consultant dignosed blepharospasm almost immediately i walked into his surgery and seemed more interested in my dry eyes. His thought are that the dry eyes can cause it and if you tret the dry eyes he blepharospsm sometimes disappears or becomes manageable. so he inserted a soft silicone plug into one of the puncta in my driest eye. Anyone else had that? Anyway that helped that eye by healing it up so that no lasting damage is done there,but unfortunately the spasms were still there and by that time slightly worse. I am not sure what the worst scenario is for Blepharospam. I wonder if the spasms lasting for hours are in fact lots of spasms close together lasting in total for a few hours???
Another strange thing about this weird disease that i have found is that when i am out walking and my eyes close for a while, they can suddenly fly open if I feel there is an emergency...like if I suddenly feel myself walking off the kerb. they close again...but in that time i am sure that people with me think I am an utter fraud.
An occupational therapist advised me to be up front with people immediately, especially strangers, when my eyes do their party tricks and to just say, "I have a disorder of my eyelids where they won't do as they are told, but I am fine and they will open in a minute. Just carry on talking please". How do other people explain this to strangers.
At Christmas i was in my butchers collecting my Turkey and my eyelids kept fluttering. The young chap who was serving me and who usually has a lot of banter looked quite anxious, but it wasn't until I came out of the shop that my husband said accusingly (smiling)..."I saw that!" !What's that ?" I said wondering wht on earth he was on about. "I saw the butcher flirting with you and fluttering his eyelashes at you!" he said. "He thought I didn't see him but I did!" How i laughed! the poor bloke was only fluttering out of sympathy!

About the meige..well i don't know about your spasms there i am afraid. I have my teeth clicking to one side in time with the eyelid spasms occasionally and the Consultant said that this might be the beginning of Meige.
wow, i have really rabbitted on here. Sorry! But please keep talking to the group.
pippa...repentant for taking up so much room and time!!




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Re: New Guy in Town

Re : Re: New Guy in Town --- Pippa
Posted by Ken C. ģ , Mar 19,2002,19:10 Top of Thread Archive
Pippa, you said:

>>Another strange thing about this weird disease that i have found is that when i am out walking and my eyes close for a while, they can suddenly fly open if I feel there is an emergency...like if I suddenly feel myself walking off the kerb. they close again...but in that time i am sure that people with me think I am an utter fraud.

I know exactly what you mean. Many times while driving I'll have incidents like that. If someone is riding with me it doesnít seem as bad either. I'm still putting my head back though. Unfortunately my wife does most of the driving when we go out anywhere. Itís just a lot safer. This is probably the worst part for me because I've always enjoyed driving.

>>An occupational therapist advised me to be up front with people immediately, especially strangers, when my eyes do their party tricks and to just say, "I have a disorder of my eyelids where they won't do as they are told, but I am fine and they will open in a minute. Just carry on talking please". How do other people explain this to strangers.

Lynn Yarbrough says:
"I have a rare neurological condition that makes my eyelids spasm"
That seems to be the best and shortest answer. Ken




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Re: New Guy in Town

Re : New Guy in Town --- Ken C.
Posted by Delaine Inman ģ , Mar 19,2002,23:30 Top of Thread Archive
Hey new guy in town. My son lives in Jefferson TX and has a B&B there. We are driving down from TN at the end of the month. I bought a used conversion van because I drive better if I am looking down and if I'm not driving I can get in the back and pull down the shades. I drive for only short periods if I'm having a good day. I have neck problems and this works much better for me. Your story is very familar. Welcome to the group.



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