What do you think/know caused your BEB?


Posted by Shanasy in IL ® , Mar 13,2002,21:42   Archive
I thought it would be interesting to take a survey of the various things (stress, drug, traumatic event, other disease, virus, environmental toxin, etc.) that people feel are responsible for giving them BEB - for those who has a suspicion anyway. I think it would be also helpful (for easy scanning) as you answer this (if anyone does) to change the SUBJECT line to the actual suspected cause name. OK...I'll go first...

Shanasy

I can't count the number of times that family, friends, doctors have asked what was going on in my life when or before I got BEB. I've asked myself that a million times!




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Re: Woodworking with toxic woods & stains

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Shanasy in IL ® , Mar 13,2002,21:45 Top of Thread Archive
I feel after analyzing this (what was going on in my life when/before I got this) for 2-3 years and spending tons and tons of hours researching neurological diseases/disorders on the net I finally came to a conclusion what I feel is 90% probability what is responsible for my BEB is due to my woodworking with exocitc woods (which are known to be neurolically toxic) and/or using oil-based stains. The stains were giving me terrible 3-day headaches if I did not wear a mask (even with a fan on).

About a year before my BEB symptoms began I suddenly took up woodworking and was spending many hours a day doing it working with exotic, toxic woods. YES I did wear a breathing mask, but many of them are very ineffective. I could always smell the wood which told me I was probably breathing it anyway.

Shanasy (breathing better air now! lol!)




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Re: What do you think/know caused your BEB?

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Delaine Inman ® , Mar 13,2002,23:43 Top of Thread Archive
I weighed 9 pounds at birth and was a forceps delivery.
I was exposed to a lot of chemicals on the farm and gardening all my life.
I had chronic sinus problems since childhood and took truck loads of antibiotics.
I went to nursing school when I was married and had a 10 week old son and was in health care for 27 years, many of those years were in management and in intensive care/cardiac. I thought I had my dream job when BEB hit me, but the department was downsized twice in the 4 and a half years I was there.
I had head trauma from domestic violence in 1978.(He never got another chance.) I've been in 2 minor car accidents where I had whiplash.
I had a lot of stress in my personal life with relationships and my daughter. I didn't get professional therapy until 1989 or an authentic self or spiritual path until 1989 as well.
I worked full time AND got my BS, MS, went to massage therapy school and got 5 certifications in specialties from 1988 until 1998 plus dealt with a divorce and a rebellious teenager and remarried during that period. (No wonder my body fell apart and my brain blew a fuse!)
I am a perfectionist, people pleaser, over achiever and codependent, but I've been working on that since 1989 and have improved, but have a ways to go.
I have a first cousin with vocal dystonia and 2 aunts with Parkinson's.
I got fibromyalgia(FMS) in 1991 and BEB in 1999.
I believe all of the above triggered the FMS and the BEB. THE END



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Re: What do you think/know caused your BEB?

Re : Re: What do you think/know caused your BEB? --- Delaine Inman
Posted by Ann Doyle ® , Mar 14,2002,05:21 Top of Thread Archive
Gee whiz Delaine! What a biography. You should write a book or at least been on Sally Jesse Raphael. Ann Doyle



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Re: What do you think/know caused your BEB?

Re : Re: What do you think/know caused your BEB? --- Ann Doyle
Posted by Delaine Inman ® , Mar 14,2002,19:55 Top of Thread Archive
Well Sally is being cancelled. I want to be on Oprah. I do write poems and stories about my life. It has been a soap opera and just when I thought I had it figured out, FMS and then BEB. Oh well!



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Re: Fibromyalgia question/Delanie

Re : Re: What do you think/know caused your BEB? --- Delaine Inman
Posted by denise mckew ® , Mar 14,2002,09:10 Top of Thread Archive
Delanie,
I was wondering what you take or do to control your fibro pain? Are you a "keep it warm" person like me?
I agree that it is a cascade of events that set off these conditions.

Denise




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Re: Fibromyalgia question/Delanie

Re : Re: Fibromyalgia question/Delanie --- denise mckew
Posted by Delaine Inman ® , Mar 14,2002,19:52 Top of Thread Archive
I've never done well with extremely cold weather and my FMS hates it. I do like to sleep in a cold room snuggled under lots of covers. Otherwise warm temps are my fav. I do stretches, have 2 sizes of exercise balls, have learned to set limits on physical activity and emotional upsets, get a massage and see chiropracter 1-2 times a month, and take my Celebrex and Klonopin. I also eat a lot of protein after 5pm and avoid carbs, sugar, fruit, starches, pasta, rice after 5pm. That has helped my FMS.



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Re: STRESS BROUGHT IT ON BUT DIDN'T CAUSE BEB

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by June in Toronto ® (June Floyd,June in Toronto), Mar 14,2002,02:31 Top of Thread Archive
I have no idea what caused my beb - seems I've been blinking since childhood - stopped as a teenager and young adult, then it came back later on. The last 2 years before I was diagnosed with beb was very stressful. I had a 3 female operations during that time and a new boss at the university who was politically incorrect and for whom I found it very hard to work with, even though, to me, he was ok. I just could not deal with his lying and deceitful work ethics. I believe that stress can be a precursor to any health problem.

June inToronto (beb/meige)




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Re: Drug - Celexa

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Shanasy in IL ® , Mar 14,2002,07:06 Top of Thread Archive
Someone else saw my posting and sent me this info. I thought everyone should see this:

When I was in a Day Program for depression at the Hospital The Dr.
wanted to put me on Prosaic but I told him I had heard to many bad
things about it! So He said he would let me take this other drug called
Celexa. Within 3-5 days I started getting the light sensitivity. I told
him and the rest of the people teaching the program about my trouble but
they all said the celexa would not cause the eye problem. I continued in
the program for 9 months before I found out I was coming down with
Dystonia. My Neuro told me that just one pill of celexa can do that and
that I have it for life! The fine print from the maker of Celexa tells
it can cause Dystonia!




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Re: Drug - Celexa/Doctors often scoff

Re : Re: Drug - Celexa --- Shanasy in IL
Posted by Sally - in - Idaho ® , Mar 14,2002,16:00 Top of Thread Archive
Doctors so often scoff at us when we tell them we think we are experiencing side effects from a new drug (even when the side effect is listed on the printout as a common one, not one of the rare ones). I told my doctor yesterday that I suspect Zocor is causing my hair to fall out more than ever and that it was listed as the third most common side effect on the literature. He said, no way. Hair just falls out as you get older. Hmph. Not like this. My hairdresser of many years swears it is medication doing a number on my tresses. But who is she to argue with a medical professional! I should have bargained for a wig from the doctor if I agreed to continue the drug, which he insisted I do!

Sally in North Idaho who does not like thin hair!!!




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Re: Drug - Celexa/Doctors often scoff

Re : Re: Drug - Celexa/Doctors often scoff --- Sally - in - Idaho
Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Mar 16,2002,06:20 Top of Thread Archive
I don't blame you! Is there another drug similar to zocor that might not cause this hair falling out?



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Re: Drug - Celexa/Shanasy

Re : Re: Drug - Celexa --- Shanasy in IL
Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Mar 16,2002,06:25 Top of Thread Archive
I absolutely cannot comprehend how a doctor could prescribe these drugs without informing the patient of these possible permanent disabling effects!? Aren't they the ones that are supposed to be reading the fine print??



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Re: Drug - Celexa/Shanasy

Re : Re: Drug - Celexa/Shanasy --- Kathy in Atlanta
Posted by Shanasy in IL ® , Mar 16,2002,14:07 Top of Thread Archive
Ut ohhhh you got me on my soapbox again....

Well yes they are, however there are THOUSANDS of drugs out there and they all have their own minor and major side effects. I don't know how any doctor could possibly know all the side effects of all the drugs they prescribe or anywhere close to that. I believe they are entirely too busy to sit down with each patient and go over the lengthy list of side effects (and most of them are lengthy) and ANALYZE whether they are worth risking. All drugs can have serious side effects - and many can be much worse than dystonia! All drugs are risky because they alter the body's natural chemistry. Surprisingly, I think there are too many people that think if their doctors don't warn them of side effects that that means there aren't any. Hopefully someday people will take much more repsonsibility for their own healthcare and not just blindly leave it to their drs. As many times as I have been to a dr., I have only ONCE had a dr. tell me of side effects. Drs. usually expect their patients to take what they say carte blanche (sp?) – unfortunately, that's what most people do!

So I say ALWAYS read the literature or search on the net ALL the details of any drug you are prescribed. Only YOU can decide whether the risk of serious side effects (listed in the drug info), which are very real, are worth taking the drug to mask/rid the symptoms. I never take a drug without knowing what the PDR says about it and taking a hard look at side effects.

Thanks for listening to me vent!




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Re: Drug - Celexa/Shanasy

Re : Re: Drug - Celexa/Shanasy --- Shanasy in IL
Posted by June in Toronto ® (June Floyd,June in Toronto), Mar 16,2002,16:48 Top of Thread Archive
You make a lot of sense, Shanasy.

June in Toronto (beb/meige)




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Re: Drug - Celexa/Shanasy

Re : Re: Drug - Celexa/Shanasy --- Shanasy in IL
Posted by Sally - in - Idaho ® , Mar 16,2002,23:07 Top of Thread Archive
Good venting, Shanasy!

Sally




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Re: Soapbox/Shanasy

Re : Re: Drug - Celexa/Shanasy --- Shanasy in IL
Posted by Shirley-Arkansas-USA ® , Mar 17,2002,09:53 Top of Thread Archive
Way to go Shanasy. I couldn't agree more. Superb job of venting.
People need to be aware that there are not just a handful of drugs that can have minor to serious side effects-most all prescription and non-prescription medications and yes, even "natural" and herbal supplements have hundreds of possible side effects.
Thank you Shanasy.
It was a pleasure to listen to you vent.

Shirley in Arkansas




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Re: What do you think/know caused your BEB?

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by denise mckew ® , Mar 14,2002,09:03 Top of Thread Archive
I think trauma and stress brought on my BEB. I had my first accident June 99 and had not completly healed when I had the second accident last May. The blinking started by the end of May and by Novemeber I had bad spasms and my eyes began to close.
Denise



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Clueless

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Virginia ® , Mar 14,2002,09:20 Top of Thread Archive
It seems like I have had dry eyes, photophobia and excessive blinking all my life - just not to the extreme degree that I do now, and certainly not the Meige (although I've been a night-time teeth-grinder for years). BEB just snuck up on me gradually and it wasn't until I was diagnosed that I realized that these things had been getting worse for some time. I can't pin it down to anything. I have always been demanding of myself and probably placed myself in stressful situations, but stress at that time was no worse than usual. I went through this same "trying to figure out the cause" thing when I was diagnosed with breast cancer (virtually no risk factors other than being female) and couldn't come up with anything then either. Sometimes stuff just happens that we can't figure out. Doesn't keep me from wondering, though.

Virginia in AL




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Re: Clueless, too

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Shirley-Arkansas-USA ® , Mar 14,2002,11:46 Top of Thread Archive
I've always been a squinter and somewhat light sensitive. I've thought back and wondered about different viruses that I've had that have caused brief dystonic-like symptoms. I've had several neck type injuries from falls. Like Delaine elluded to, the nursing profession is a high stress atmosphere. Several years before BEB, I worked at a rehab hospital. They started downsizing and staff decreased continuously while the nurse workload steadily increased. The last year that I worked there, I developed a chronic tic that finally resolved after I quit the job. The job, itself, I loved. The stress and pressure was too much, though. I went back to work in school nursing which in the nursing profession is very low key and low stress.
There was extra stress when first real symptoms of BEB began as parents were becoming much more dependent on me and they had repeated hospitalizations as their health failed.
I've always thought that my 27 years of contact lens usage was a contributing factor. I've also thought that allergies played a role.
I also had pneumonia twice and took antibiotics for an extended period of time some 6-8 months before BEB symptoms began. One of the antibiotics was Biaxin (which Judy B. has thought might have caused her problems) and also the antibiotic Raxar which was new at the time but was taken off the market suddenly within a year of the time that I took it.
I suspect lots of different things but which one played the biggest role? In my way of thinking it could have been any number of the above mentioned or combination of or none of them. Maybe, it has to do with the fact that I also have attention deficit disorder and that is well known to be caused by neurotransmitters in the brain not connecting properly. BEB is thought by some to be due to neurotransmitters malfunctioning in the brain. Is there a link here? Do I have a genetic predisposition for? I think so.

I think that we will eventually find that many things can go wrong and effect our brains to the point that BEB develops.

Shirley in Arkansas who wishes that she did have one particular thing to blame it on.




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Re: Clueless, too

Re : Re: Clueless, too --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho ® , Mar 14,2002,16:05 Top of Thread Archive
In that case, do you think your son who has ADD is genetically susceptible to BEB?

Sally in North Idaho who blames many things for the onset of mine, one of which being that my mother had BEB.




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Re: Clueless, too

Re : Re: Clueless, too --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA ® , Mar 14,2002,16:23 Top of Thread Archive
Possibly, Sally. The ADD comes from my father's side of the family. From my mother's side comes the tendency to choke easily-it is more of a throat spasm which can and does occur with or without eating anything. Certain foods or liquids do seem to trigger it, though. This happened with my mother frequently and with all of her children and with my youngest son who has ADD. He doesn't have the squinting or light sensitivity that I did at his age, though.

Who knows? I certainly hope that he never has to deal with this.

Shirley BEB/Apraxia




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Re: What do you think/know caused your BEB?

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Joanne Matuzas ® , Mar 14,2002,15:51 Top of Thread Archive
Since I have always been a blonde and somewhat fair skinned, I have
always had squinting in sun or bright lights. But other than that,
I was what I would call pretty normal. In 1995, my world took a tumble when my husband of 27 years decided to leave the marriage and hook up with an old friend of mine--it got downright dirty--even an isolated police incident when I tried to take some paperwork from the business he and I owned!! Anyway, shortly after that I started working in full florescent lighting in an office with much computer work. So I attribute the emotional trauma together with the new working conditions for my blephs. No doubt in my mind. Learning how to feel good these days even with the blephs and of course lots better when the symptoms are less troublesome. I believe God has a purpose and plan with all of
this and that it is slowly unfolding. Joanne M. San Diego, CA



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Re: Childbirth?!

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Kelly Saffell ® , Mar 14,2002,16:13 Top of Thread Archive
I developed symptoms immediately after my first daughter was born. Prior to having her, I had miscarried twins one month apart, had an infection in my uterus, miscarried again, and then finally got pregnant with her only to be put to bed with a torn placenta. I then had preterm labor and was on bedrest for the last 2 months. My labor and delivery were quick and easy but I soon began to feel like my eyes were heavy and I couldn't hold them open. I thought it was the fatigue of motherhood-guess I was wrong!

I am obviously genetically predisposed to beb-my grandmother and 2 of her siblings have it, one of her cousins has sd and alot of family members have essential tremors. Why I was lucky enough to develop it in my mid-20s still remains a mystery.
Kelly

--modified by Kelly Saffell at Thu, Mar 14, 2002, 16:16:52




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head trauma from a car accident

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Carol Brown ® , Mar 14,2002,17:21 Top of Thread Archive
I was in a terrible car accident when I was 21 years old. I broke the windshield with my head and was knocked unconscious for a while (don't really know how long). My doctor seems to think this is the cause, although he doesn't know for sure. Symptoms of BEB didn't show up until later in my life.

Also, I was a forceps baby and in an incubator for a while. They thought at that time, there was some brain damage. In those days, they didn't have the sophisticated equipment they have today, so they couldn't prove it, they just assumed it. I did grow up normally however and led a full, productive life. When I was in my 30's, I had an MRI taken and the doctor told me there was no sign of a brain injury. Anyways, I really would like to know for sure what caused this problem, but maybe I never will. I just know that things could have been so much worse.

Carol brown, Naselle, WA




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Re: head trauma from a car accident

Re : head trauma from a car accident --- Carol Brown
Posted by Gisela Rentmeister ® , Mar 15,2002,22:19 Top of Thread Archive
Hi again, Carol. I thoroughly enjoyed our e-mail exchange and will write again. Reading your Mar 14 message on the bb, I now realize how traumatic your accident really was. This reminded me of an accident I had as a child. Tomboy that I used to be, I fell from the roof of a building and was in a coma for a few days with a severe head injury. Now, this happened what seems like half an eternity ago, so I'm rather hesitant to assume a possible cause there for my Meige disorder. Members of my family in Germany assured me that there's never been anyone in the family who suffered from any kind of a neurological illness. I'd give anything to know what on earth may have been the cause of this misery.

Gisela, who will never EVER give up hope.




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Don't know, but if I had to guess—maybe stress.

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Tim Johnson-PA-USA ® , Mar 14,2002,19:46 Top of Thread Archive
Having gone through a prolonged period of severe stress for a number of years, the BEB appeared. Did stress cause it, or just bring it out? I also had a bad head injury from a fall as a young boy, but never any lasting affects. My intense personality and leanings toward being a perfectionist are just what I am, but I don't think they caused this disorder. Only thing I know for sure is that BEB got me good!
Tim in PA who is still wondering what really caused all this suffering.



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Re: What do you think/know caused your BEB?

Re : What do you think/know caused your BEB? --- Shanasy in IL
Posted by Pippa ® , Mar 15,2002,07:58 Top of Thread Archive
I don't know if there is any connection at all but I had just stopped taking HRT when the first symptoms became apparent. I have read that women who take HRT have a highter incidence of having "Dry eyes" afterwards than women who haven't.
My consultant (Opthalmic) reckoned that the dry eyes were making me blink more, and that this was causing the spasms, and so he inserted a soft silicone plug into one of the puncta in my worst eye to stop the tears draining away so fast, so that it could heal ...and hopefully my eyelids would stop blinking to smooth tear film over the eye. I think he thought also that the lids got tired doing this and eventually went into spasm. Certainly when they are dry they are even worse than usual. Anyone else had dry eyes after HRT?
I also was working with chemicals...



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Re: What do you think/know caused your BEB?/Pippa

Re : Re: What do you think/know caused your BEB? --- Pippa
Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Mar 16,2002,06:39 Top of Thread Archive
Pippa, (Pippy Longstocking?)
I tried the hydroeye ( which i had a mild allergic reaction to) and am now taking the MoistureEye supplement to hopefully prevent the dry eye that can occur with HRT., as well as the drying effects of the botox injections.



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Re: What do you think/know caused your BEB?/Pippa

Re : Re: What do you think/know caused your BEB?/Pippa --- Kathy in Atlanta
Posted by Pippa ® , Mar 17,2002,02:57 Top of Thread Archive
When you say "supplement", what do you mean, June?



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Re: "Supplement"?/Pippa

Re : Re: What do you think/know caused your BEB?/Pippa --- Pippa
Posted by June in Toronto ® (June Floyd,June in Toronto), Mar 17,2002,07:25 Top of Thread Archive
In what context did I use the word supplement, Pippa - I couldn't find my post?

June in Toronto, supplement means to add to, as in vitamin supplement!





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