Posted by: Christine ®
02/21/2003, 15:17:41
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I think that when you are first diagnosed you spend a lot of time trying to find a cause and asking why and how did this happen. The answer isn't as simple as sinus or climate, everyone has a different story to tell. It took me a while to come to grips with the fact that my eyes weren't going to get better. As for your wood fire, maybe it is making your eyes dry, so check you don't have Dry Eye as well. I'm 53 and have had this for nearly 2 years. I wore contacts for 17 years but then my eyes rejected them when I was 31. I think the menopause tipped me over into this thing, but I don't think it caused it. Good luck.
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Posted by: Kathy in Oregon ®
02/21/2003, 17:46:06
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i do think perhaps since 4 times as many women as men go thru this that maybe their may be some correlation but for those of those who were diagnosed at a very early age, other major factors were involved.
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Posted by: Kathy in Oregon ®
02/21/2003, 17:35:47
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Dry eye is always a concern with taking hormones, I believe, But since i have cried my eyes out I no longer believe tha I have dry eye; there are real tears. I may also be allergic to wood smoke in fireplaces, exacerbated by the recent forest fires we have have had in oregon, and the cold temperatures necessating heat, and the fact that i cannot take a walk in certain conditons. I would suggest that you stay in whenever such circumstances impose a hazard or go to gym or other place to get your exercise.
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Posted by: Linda Overton ®
02/21/2003, 19:33:32
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I also am an overachiever. I was diagnosed with blepharospasm 3 years ago- have looked for a "cause" and it seems to be so varied and elusive if at all. I noticed dry eyes also before the symptoms of blpharospasm got bad. I have never experienced sinus infections. I've always been a picture of health-never having even experienced a headache-no medications of any kind before blepharospasm (now I've tried 12 different meds as a help) I am 56 and have only become perimenapausal in the last 3 months. We have a wood fireplace that supplies most of our heat in the winter. I've not been able to tell a negative difference in regard to dry eyes. Lots of questions-fewer answers.
Good luck,
Linda in soggy Memphis
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Posted by: Christine ®
02/21/2003, 19:58:41
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Becky, I've just realised you already have Dry Eye, maybe you need to use more drops in some conditions. My Eye Specialist said "more drops not less".
Kathy, I'm envious of your tears. I think I'd feel a whole lot better if I could have a damn good cry.
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Posted by: Ann Doyle ®
02/22/2003, 13:51:37
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Christine, you go ahead and have that dam good cry. You don't need tears just lots of sobs will do.
I think we have all tried to pin it (bleph) on something. I hit my head. Who hasn't. I was in a car accident. Weren't we all. I had dental surgery. Same ole same ole. I moved from a dry climate. I moved from a damp climate. I went through menopause (men have never used that one) My favorite is I was the picture of health till I got sick. Please, I am not making fun of anyone. Those are all the things I told myself . I still think it might be genetic in some cases but that is smalland again it's like saying some people have naturally curly hair. Ann Doyle
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Posted by: Rita Molnar ®
02/21/2003, 21:33:35
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Hi, Becky....My name is Rita. I live in New Jersey, and I have BEB and Meige. I'm 64 now, but my symptoms began in my late-40's to early 50's. I was diagnosed about 2 years ago, by a Neuro-Opth who took the time to listen to me and to really observe my symptoms. I've been "hanging around" this BB for over a year, and I'm learning that many of us have much in common. Many are over-achievers, Type "A" personalities...perfectionists...Some of us wonder if head trauma started the whole thing...sinuses?...dry eyes...early childhood diseases? ... genetic disposition?...name it, and you'll probably find it mentioned somewhere in the archives. I'm one of those people always looking for some common thread that might answer my questions. I've found many things in common with many people--Heck, I even found a person on the BB who retired from the same workplace, who lives in the same hometown, went to the same primary and secondary schools, whose husband has the same first name as mine, and who even has the same last name as mine...Wouldn't you think somewhere in there is a "link"? I've done a lot of reading about BEB and other dystonias, and I check the BB out regularly to hear what others have to say about it. But I know of only two things for sure...that: (1) None of us know for certain where it came from, and (2)There is no "magic bullet" to cure it. When you mentioned sinuses and allergies, it made me think about myself. I do find that when I'm suffering from allergies and sinus problems, that my BEB REALLY acts up. I find also, that Benadryl is helpful, not only for sinus and allergies, but also to calm my BEB symptoms.. So I think I can relate to some of the questions going around in your mind. Some things feel so closely related to the dystonia, that almost certainly they should be the cause. But I'm not so sure that's so. I'm now post-menopausal, although my symptoms began just prior to menopause. Hormones, just prior to and during menopause, have a way of "eeking" out a lot of stress and anxiety never experienced in earlier years. I've always believed that somehow the stress of being an overachiever, and a perfectionist...and the stresses related to a very high-pressure position at a large University...factored immensely into my own Blepharospasm. As far as the cause of it all, It's always been my personal belief that BEB must be genetic--and those of us who suffer from it must have always had a pre-disposition, but the condition itself has various types of triggers, which at some point in our lives, for reasons unknown, become so overpowering that our bodies give in to the pre-disposition, and the dystonia results. I'm not trying to "sell" this notion to anyone...and I'm always keeping my eyes wide open (well....as open as I can keep them) for everyone's contributive thoughts on causes, triggers, etc. Shortly after I was diagnosed, I felt so grateful to have a name to put to this "thing" I had, which no one seemed to understand. Then I went through a period of strong denial, because I believed that I, of all people, should be able to control this "movement" thing, because I believed there was NOTHING THAT I COULDN'T DO IF I PUT MY MIND TO IT. It has been several years since my diagnosis, and although I've finally accepted that I indeed have BEB and Meige, there are still those times when I wonder?? Likely, these doubts will remain with me always. Another reason for doubt is that other people's symptoms don't always mimic mine. Then, I have to remind myself that everyone seems to have different symptoms--some less, and many greater than my own. But that's the nature of this stupid condition. It seems to show itself in so many different ways--the one common link being that it is uncontrollable simply by our own will. It has always been my hope that researchers are taking the time to review and seriously consider all of the comments and suggestions on this BB, because I truly believe that the answers they seek are somewhere between the symptoms and the similarities we all share. Anyway, for right now, my concentration is focused on ways to alleviate the symptoms, in order to live a reasonably comfortable and functional life despite this miserable %$#@$%##*&* thing that crept up on me.....And, I keep praying for some wise and wonderful doctor/researcher to find us a cure. Just a little more about me--I recently opted for a blepharoplasty, because I firmly believed that my lids, which were becoming thick and heavy, were triggering my blepharospasm. A month after my surgery, my eyes are now staying open, and the spasms or eye-closings have really improved. Maybe I was right. But my surgeon cautioned me against being overly optimistic, however, since it is likely that the nerve endings which were severed during the operation will likely regenerate...and the BEB might return full-strength at some later date. I intend to maintain an attitude of "So What?" I WILL enjoy what I have RIGHT NOW, and for as long as it lasts...and even if the BEB does come back real strong, I'll probably look a lot better, anyway. (Oh...and about Botox...I've been getting the shots for 2 years now, and while I had some problems at times with their effect on my smile, Botox effects do wear off. Also, even though some people have talked of injection pain and bruising, this has not been my experience. Might be worthwhile looking into if your symptoms are very troublesome.) I don't know how helpful my comments are to you, or to anyone who reads them, but I do thank you for sharing yours, and I hope you stick around for a while to see what others have to say. Best wishes... Rita in New Jersey
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Posted by: Sherrie Feltz ®
02/21/2003, 22:13:19
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I too have had sinus trouble and allergies for several years. Also an over achiever. I am 48 and am post menepausal by 3 years. I started into menpause about 5 years ago and I've had people around town tell me lately that they noticed my excessive blinking 4-5 yrs. ago. Then the dry eyes and from there it was a very short period of time to where I am today,95% of the time the eyes are squeezed shut and no matter how hard I try,I can't "open sesame" and talk them into the open position.
Congratulations to you on your surgery and continued good luck.
Sherrie in FL
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Posted by: June in Toronto ®
02/22/2003, 09:05:58
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Hi Rita, I happen to agree with your comments about beb being genetic and that major stress (or a build up of stress in one's life) can `bring it on' - as it can with other diseases. I have said before that I don't think I dealt with stress very well year's ago - am better at it now. You are also correct about there being a lot of archival posts on `common threads'. When we are new to this disease we all try to figure it out - its only human.You wrote a great post, with lots of common sense. Best wishes June in Toronto (8 years beb/meige)
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Posted by: Barbara Molnar ®
02/22/2003, 10:43:51
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Your explanations and thoughts on BEB were wonderful. All of us have many of the same symptoms and a number of us have a few extras or less than others. BEB effects my life about 30% now. I've had it for aqlmost 5 years as I've told you before and am also an over-achiever. I still keep hoping and looking for ways to handle it and am now going to try hypnosis. I recently read an article about how it helps with a lot of different things in a medical journal so I'm going to give it a try. I have an appointment on Wednesday of this week so we'll see how things go.Good luck to all of you. Barbara Molnar in New Jersey
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Posted by: Ann Doyle ®
02/22/2003, 14:05:23
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Reading the last series, it sounds like only over achievers get Bleph. Then it dawned on me, no one is going to say I was always an underachiever. I don't think underachievers even realize they are. I think we should have one big SOB with Christine and get on with life. Heres to all the over achievers, under achievers and just right achievers. Ann Doyle
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Posted by: Christine ®
02/23/2003, 17:55:56
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Ann, Your post made me laugh. Much better therapy to laugh instead of crying.
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Posted by: denise mckew ®
02/23/2003, 11:24:38
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Becky,Maybe it wasn't the actual sinus infection, but the medications used to cure it. A decongestant may have added to your already dry eyes? And the straw that broke the camel's back. Take a look at the link on my post "Dry eys and still learning". There is research being done on dry eyes triggering BEB. I've stopped wearing my contacts (except for special occasions). And I am using eye drops and GenTeal gel at night to try and keep my eyes lubricated. It's one of those can't hurt, may help senarios. I don't fit the classic BEB diagnosis. Mine actually went into a short remission for about 2 months last fall, then became active again in Dec. Not typical at all. I do think that stress is a major contributor, and I wonder a lot about the side effects of the meds I take (Neurontin and Zanaflex) for other problems. What I have come to believe is that once BEB is set off, it won't completely go away. And therefore it has to be treated in order to maintain any type of quality of life. Take care,
Denise
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Posted by: becky templeman ®
02/24/2003, 14:38:12
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I started Yoga before my spinal tap to strenthen the spine before the trauma; now I'm diligent doing it every day, it's wonderful balance, as I'm kind of "offf" these days---put the Cascade/dishwasher soap into the refirgerator last weekend, and our gornw kids found it, and wondered who was the culprit? Yoga also seems good for relaxing the face during the calming down time; I use Barone batiste and his so-fit models on a video cassette from the library. Doing the stretching, in the dark caverns of my basement is the only kind of exercise I can handle now. I'm hoping that after my first Botox treatment on March 4, I can return to bicycling and jogging...do you think?
I will go to the University of Virginia's Botox clinic. Again, does anyone know if women from "the west" Nebraska, Colorao, Arizona, new mexico, suffer as much as we Easterners? I'd move back in a heartbeat if it were true...
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Posted by: Lynn Yarbrough ®
04/18/2003, 12:34:28
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>my husband and I were wondering if people in dry/semi-arid or arid climates suffer from bleph? <
You bet. I live in Palm Desert, CA, humidity typically 20%. When I was diagnosed I was living in Boston, humidity about what you would expect living near the ocean. It makes no difference in the spasms.>Although I've probably been in denial about having a set of symptoms to which there is no "cure," <
Yep. We all go through it -- what you are experiencing is grief, which includes denial, anger, ..., finally acceptance. You adapt, learn to live with it. I've had the condition for 40+ years, but am living mostly normally, with few limitations. >the eye blinking really increased, got new contacts, semi-perm, then tried new soft lenses, have two paris of glasses now, and every now and then, I will try wearing the soft lenses. <
These make little or no difference. We're not talking about an EYE condition, it's an EYELID condition. Completely different thing. >I'm skeptical about botox, <
Properly administered, it's wonderful stuff. The shots have restored my life. Where do you live? I know good Doctors on both E & W coasts. BEBRF has a list of competent Dr's everywhere. Your reaction to the treatment will be uniquely yours, and you may have to work with your Dr. for as much as two years to get the dosage right. (Oh -- did I mention that patience and a good sense of humor are essential? :-) ) --- Lynn
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Posted by: June in Toronto ®
04/18/2003, 15:12:08
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Hi Becky, others on the bb had worn contact lenses in the past (I never have) and, although they don't think they caused beb, they mostly have stopped wearing them bcause of the irritation. Although Lynn states (and rightly so) that beb is not an eye condition, it does affect the eyes imho. Constantly having the eyelids spasm make the eyes very tired in my case and botox, although it definitely helps me, drys out my eyes considerably. I use drops/gels and creams 365 days/year and still got dry corneas, which is a problem. I also get a lot of eye pain from the injections for up to a month after them (among other side effects) until things settle down. I find the cold, windy, winter months here in Ontario very bad for my eyes - I try to cover them up with dark wrap around glasses during the day and clear safety-type glasses if I have to go out in the evening, although neither glasses completely keep the wind out. Like you mentioned in another post, I practice yoga and find this very relaxing and the best kind of excercise. I'm wondering if I'll ever get back on my bicycle as the balance is unreliable with the eyes. In good times (not now) I am able to do fitness classes and find the eyes are better for that period of time. I'm not sure what `patch' you are referring to (I've got a senior moment maybe!). Take careJune in Toronto where its a bit milder today thank Goodness.
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Posted by: Lyn Down Under ®
04/18/2003, 19:08:16
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Hi BeckyI don't think it matters where you live or what sort of climate you enjoy - an ophthalmologist once told me, with my colouring - (I am fair) I should be living in a cool, misty environment such as UK and NZ. However, we have people with BEB from both those places on the BB. I live in a Mediterranean climate area - hot, dry summers and wet not too cold winters. My BEB is the same throughout the year and there is no improvement when the sun goes away and it is damp. Not sure why you are skeptical about Botox - I have had it for over 13 years and could not live without it. I have no bad side effects and it enables one to live a relatively normal life. I am at present experimenting with the UK version of Botox, Dysport, to see if it has a longer duration period. I also use a small amount of a gel at night which makes for greater eye comfort. The most important thing is to find a doctor who really understands the condition and will treat it in the way you want it to be treated such as having the injections when you feel you need them and not according to some schedule the doctor has. This can take a bit of doing - finding the right doctor - but it is essential. Lyn in Autumn now and enjoying the cooler weather
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Posted by: catherine ®
04/19/2003, 11:45:32
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BeckyI am one who is very effected by the humidy. I live in Calgary Alberta where it is extreamly dry but when I go and spend the summer in Ontario it much better for my eyes.
Also when I go to Mexico or Flordia they are better. I do not find much relief when I am in Vancouver so I am putting it down to warm, humid days AND nights. I know people will say tha "well your eyes could be better because you are on vacation and you have less stress. The same happens when I am in Ontario, in the summer with exteame stress visiting y mother, so I am sticking to the theory warm and humid works for me Catherine
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