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| How long do people have Blepharospasm/Meige? |  | ||
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Posted by: mustard ® 01/28/2005, 14:26:17 |
I just read a 1996 article (http://list.dysphagia.com/dysphagia/2002-April/msg00204.html) that said the mean duration of this illness was 3.7 years. I was diagnosed with Blepharospasm just over a year ago and now I'm showing symptoms of Meige. Do people really recover from this? Is there anybody who's opting not to get the botox? Is there an open survey of patients on a web site somewhere? I'd appreciate any info you can give me! |
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| Re: How long do people have Blepharospasm/Meige? -- mustard | Top of thread | Archive | |
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Posted by: Lynn Yarbrough ® 01/28/2005, 14:42:29 |
Sorry to rain on your parade, but I think that 3.7 years may be the average time *before diagnosis*, not after. I have had BEB since 1960 and have been on Botox (very effective for me, BTW) since 1990. The problem is that there is no known cure, and it does not, as a rule, go away with treatment except for a few months. There have been a very few cases of spontaneous remission. Yes, there are patients for whom Botox is ineffective: whether that's because of lack of experience of the Doctor or chemical resistance to the paralysis I'm not sure; probably the former. Botulism is so toxic that it's hard to imagine the stuff having no effect, as some have experienced it. The BEBRF, available through the buttons at the top of this website, has lots of statistical data about the disease and how effective treatments are, and I have found them to be quite open about these issues. --- Lynn |
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| Re: Re: How long do people have Blepharospasm/Meige? -- Lynn Yarbrough | Top of thread | Archive | |
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Posted by: Sally in South Carolina ® 01/28/2005, 15:15:20 |
Hi Lynn: My dr. is very experienced, not only with giving shots, but also with the surgeries; however botox never worked on me until after my limited myectomy. He told me sometimes they just get "dud" batches. Most probable tho, is that there was too much muscle for it to be effective. When I asked him what made him think the botox would work on me after surgery when it never did before, he said because now there is less muscle in there & he was right. Now it works great. Sally in South Carolina. Modified by Sally in South Carolina at Fri, Jan 28, 2005, 15:16:18 |
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| Re: How long do people have Blepharospasm/Meige?Mustard | | ||
| Re: How long do people have Blepharospasm/Meige? -- mustard | Top of thread | Archive | |
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Posted by: Sally in South Carolina ® 01/28/2005, 15:09:20 |
Hi there: 1 or 2 people on this board have had it go away, but there are lots more who have had it for years. I've only had it since Oct. 2003, and I don't have much facial meige at all, so I am very lucky, just the eyes, but after the limited myectomy & botox, I'm doing good. Others will give you their information & probably more info than I can. I am going to read the article you referred us to...that sounds hopeful, maybe! Take care, Sally in South Carolina. Modified by Sally in South Carolina at Fri, Jan 28, 2005, 15:16:54 |
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| Re: How long do people have Blepharospasm/Meige?Mustard | | ||
| Re: Re: How long do people have Blepharospasm/Meige?Mustard -- Sally in South Carolina | Top of thread | Archive | |
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Posted by: mustard ® 01/28/2005, 15:49:37 |
Sally, I'm curious, what made you opt for the myectomy so soon? I'm assuming the botox didn't work? I just started noticing I couldn't stop blinking in Oct of 2003 and got my first injections in March 2004. The botox works for me but I'm trying to do without so I can research what's causing it in me or at least what makes it worse. If I had been under the influence of botox, I'd never have noticed I can stop blinking if I look at my fingerprints, for instance. Someone told me the other day, they could garden for hours but wouldn't be able to walk to their mailbox - I can certainly relate. This is so frustrating that there's no place to go for a run down of all symptoms and strategies people have in common. I've read this web site and I'm not finding the statistical data very helpful. Do you know if there's an open survey anywhere? Thanks for your replies. -Terri in Texas |
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| Re: How long do people have Blepharospasm/Meige?Mustard | | ||
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Posted by: June in Toronto ® 01/29/2005, 08:32:51 |
Hi Terri from Texas and welcome to the bulletin board. Your initial post mentioned 3.7 years - perhaps that might be a time-line to suggest that if someone has beb/meige that length of time, they might not get more dystonias. It used to be suggested that 2 years was a time line but of course its not written in stone I'm sure. A few people have gone into remission but most of us don't. I know of one gal in Toron to who refuses to have botox injections (she doesn't post here). She researched the medications at the library (for side effects, etc.) and asked her doctor to try 1 or 2 on her. She is ok with the results, BUT she still has full blown beb and is extremely light sensitivity and suffersa great deal. I believe botox is the treatment of choice, at lest it is for me. Let us know how your research goes and keep in touch June in Toronto (beb/meige over 10 years) |
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| Re: How long do people have Blepharospasm/Meige?Mustard | | ||
| Re: Re: How long do people have Blepharospasm/Meige?Mustard -- June in Toronto | Top of thread | Archive | |
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Posted by: mustard ® 01/29/2005, 09:01:36 |
Hi June, thanks for answering. Do you by any chance have the woman's email address that you mentioned? I'd love to talk to her! Terri in Texas |
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Posted by: June in Toronto ® 01/30/2005, 05:57:45 |
I'll try phoning her Terri - she doesn't post on this board and is rather a private lady I believe. I'll check it out. June in Toronto |
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| Re: How long do people have Blepharospasm/Meige?Mustard/Terri | | ||
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Posted by: Sally in South Carolina ® 01/29/2005, 19:35:25 |
Hi Terri: The reason I opted to have surgery when I did, which was 8 mos. ofter I ws diagnosed was, as you guessed, because the botox did not ever work on me prior to surgery. I was not able to drive all that time, read, see TV, I worked, but had to feel along the walls, could barely do my computer work, which I used all day; therefore, by the time my specialist got to me, he gave me shots in the eylids for 3 months before I he would do surgery. At that point, we both knew i had already suffered long enough as I had a sevefre case of BEB. It was a very good decision for me. I felt it was better to try the surgery than to remain like that waiting for something to happen & it has really helped me because the botox is much more effective now. I did notice the entire time my BEB was so bad that whenever I did manual labor, like sweeping, washing floors, vacuumed, my eyes would not spasm or blink hardly at all, but when I returned to close up eye use, they got wrose again. Hope this helps somehow. Sally in South Carolina. |
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| Re: How long do people have Blepharospasm/Meige?Mustard/Terri | | ||
| Re: Re: How long do people have Blepharospasm/Meige?Mustard/Terri -- Sally in South Carolina | Top of thread | Archive | |
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Posted by: Claire from Canada ® 02/02/2005, 15:02:59 |
My own situation is very very similar to Sally's. I was diagnosed in Sept 01 and got surgery in April 04. I would have had it earlier if I had known that it would help so much. Claire from Canada |
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Posted by: judith k ® 01/28/2005, 23:16:26 |
Hi--
what are the meige symptoms you are getting? |
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Posted by: mustard ® 01/29/2005, 08:57:22 |
Hi Judith, thanks for answering/asking. The muscles all over my face are contracting especially on the lower half but even up the sides of my nose. I'm starting to grimace and pull my mouth to one side and stick my chin out. Rationally, it seems like a subconsious effort to pull the muscles out of their state of tension? I'm still very new at this so excuse me if I'm naive, but has anyone approached this from a point of veiw that it is like a mini anxiety attack and dealt with it through yoga or relaxation techniques BEFORE ENTERING THE BOTOX TREATMENT PHASE? In other words, retrain the muscles before it's too late? I know from reading everyones input that once it takes hold, the idea of yoga seems rediculous but I'm noticing the botox doesn't stop the contractions, it just stops them from closing my eyes. It seems like everyone progressively gets worse, right? So maybe the botox is allowing that to happen? Just a thought but I would sure love some constructive feedback? Terri in Texas |
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Posted by: Lynn Yarbrough ® 01/29/2005, 09:48:18 |
Hi, Terri, >It seems like everyone progressively gets worse, right? So maybe the botox is allowing that to happen?< That's not my perception at all. I stopped getting worse when I started getting my stress level under control, about 10 years ago. The Botox has AFAIK no effect on the progress of the disease, but does alleviate the symptoms. Not treating the symptoms feeds back stress into the picture and makes things seem to get worse. Nor is the condition a "mini anxiety attack". What is happening is that the 7th cranial nerve is misfiring and causing the muscles around the eyes to contract and release randomly. The muscles do not require retraining. If anything, they are OVER trained by the 7th cranial nerve. We all reach out in attempts to make this condition fit into some preconceived mold where things behave differently -- I've done this myself -- but the science (neurology) gives us a set of facts that tell a different, very unfamiliar, story. I suggest you read the available literature from BEBRF and get a clearer picture of what's going on. --- Lynn
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| Re: Re: How long do people have Blepharospasm/Meige? -- Lynn Yarbrough | Top of thread | Archive | |
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Posted by: mustard ® 01/29/2005, 10:11:23 |
Hi Lynn, thanks for the response. I could use some advise on how to control stress if you can spare the time (bballrocks@mindspring.com). I'd also like more info on the 7th cranial nerve? I didn't see that on the Bleph web site? I've seen reference to it on medical sites but I was under the impression it was still a theory with Blepharospasm? Although apparently operations to implant a device in people with other types of severe dystonia have been successful. Also, I've noticed the contractions in my face relax when I look at my fingerprints (not that I can see them without my glasses). I just wonder how that stops the misfiring. I'm not trying to disprove anything you said, just looking for feedback! Sincerely, Terri in Texas |
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Posted by: Lynn Yarbrough ® 01/29/2005, 16:09:05 |
>I could use some advise on how to control stress ...<
>I've noticed the contractions in my face relax when I look at my fingerprints...< Guess what! Looking at your fingerprints is one way for you to reduce stress. There are a host of others: singing, deep breathing, running on a treadmill, ... Each of us has unique stressors -- it's largely a matter of finding yours and reducing them any way you can. Tranquilizers may be helpful, certain hobbies help, and so on. I don't know if its still in print, but the BEBRF can tell you: "Blepharospasm and Related Disorders ... " is a valuable overview book about BEB, Meige, torticolis, etc. --- Lynn |
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Posted by: Barbara ® 01/31/2005, 14:09:39 |
Mustard
I too have suffered with Meige for over ten years. At first the grimacing, pulling and chin jutting out were terrible. Couldn't even bear to go out. Couldn't find a med that worked to control it but my doctor helps me somewhat with botox injuections in certain places along my mouth ,jaw, and chin line. It helps take the edge off if you are willing to sacrifice your smile. For me there was no choice. I got a myectemy after five years and to my delight it calmed my Meige down considerably. I can't say that for everyone but the calming of the eye spasms somewhat calmed the mouth too. I still have Meige but basically it is a repeative motion of chewing on the left side of my lips and gums. Hang in there girl. It might get better instead of worst but it rarely goes away. Modified by Barbara at Mon, Jan 31, 2005, 14:11:02 |
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Posted by: Claire from Canada ® 02/02/2005, 15:08:50 |
Hi, I get the exact same spasms that you describe. I have been taking Artane since Nov 03 and it helps with all of it. Artane does help calm the spasms, but it also altered my facial expressions; I often look like I have a long face, so I don't really look friendly, unless I am smiling. My smiles also changed; they are less happy looking. It is hard to describe. There is a give and take with drugs and there is no perfect solution. I would rather look a little more serious than I feel, than grimace all the time and have my chin stick out as it did. I don't mean to sound negative; I am not at all. I just want to tell it like it is. Claire from Canada |
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| Re: How long do people have Blepharospasm/Meige? -- mustard | Top of thread | Archive | |
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Posted by: Moderator-JB ® 01/29/2005, 01:15:14 |
Terri, Please go to the link at the top of this page if you've not already done so. (BEBRF) As of this time, there is no cure, however research is ongoing.
We have found that by comparing, we can come up with much more information that doctors usually are able to give us. Take care and ask any questions that you think of. Judy Blackman
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Posted by: mustard ® 01/29/2005, 09:11:22 |
Hi Moderator, Oops, did I do something wrong? What link? Do you mean the link to my original post with this subject. I'll get the hang of this eventually! Terri in Texas |
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Posted by: June in Toronto ® 01/30/2005, 06:04:54 |
What Judy meant, Terri, is go to the top of the bulletin board page and click on the BEBRF link. It will take you to the Benign Essential Blepharospasm Foundation page and lots of good information. You will learn a lot about this disease. June in Toronto |
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Posted by: Kathleen ® 01/31/2005, 13:10:43 |
I looked at the website you posted. There is a difference between dysphagia and dystonia. DYSPHAGIA occurs when there is a problem with any part of the swallowing process. People with dysphagia have difficulty swallowing and may also experience pain while swallowing. Some people may be completely unable to swallow or may have trouble swallowing only liquids or foods of a certain consistency, or even saliva. Meige may cause dysphagia, if the muscles involved in swallowing are affected. DYSTONIAS are movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures, or in the case of blepharospasm, involuntary closing of the eyes. Dystonias may affect a single muscle; a group of muscles such as those in the arms, legs, or neck; or the entire body. Some people experience a great deal of pain with the muscle contractions. Dysphagia is a mechanical problem of the swallowing mechanism and may resolve itself over time or be managed well with certain therapies. Dystonias are neurolgical conditions that rarely resolve and treatments are temporarily and sometimes only marginally effective. Unfortunately, blepharospasm is a focal dystonia and unlikely to resolve itself after 3.7 years. I have had BEB for nearly 4 years and have received botox for just over a year. Botox has been a life saver for me - it allows me to have some spasm free time and to continue to work and lead a relatively normal life. I would not hesitate to start the botox therapy again. Another thing to remember is that the effects of botox are not permanent, so if you get the injections and then decide that it is not the right treatment for you, you can stop getting them and within a few months, all effects of the botox will wear off. I don't know of any survey that would indicate how many people opt for botox, but I think many of us who are regulars on this BB would probably tell you that the only reason they wouldn't utilize botox is because it is not effective for them because of antibodies, etc. or that they've had myectomies that have minimized or eliminated their need for botox, and possibly a few other reasons. However, I don't think that not getting botox will lessen the effects of the blepharospasm. As Lynn pointed out, this dystonia results from a problem in the brain that affects the cranial nerves and is not within our control, so probably can't be successfully "retrained." I have talked with one lady from my state who received botox for 15 years and then quit because she lost her sight in both eyes due to another disease, so no longer cared if her eyes were closed. That seems to be a pretty good reason for not having botox. : ) Modified by Kathleen at Mon, Jan 31, 2005, 13:15:00 |
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Posted by: Jane ® 02/01/2005, 21:19:50 |
I for one am really intriqued with this "look at your fingerprints" thing. I am ready to try it. Of course I dont think it would help with walking to the mailbox but it would se great for social settings when you just cant look at theperson who is talking to you and you dont want to be rude by shutting your eyes. Thanks for the idea whoever came up with that! I used the singing and whistling for years while driving but have pretty much given that up along with the driving after I realized how dangerous it can be. NO officer I did not see the stop sign! |
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Posted by: Claire from Canada ® 02/02/2005, 14:59:17 |
Hi, I have had this since May 01. Unfortunately, it does not go away - it has no expiry date!! Some people do go into remission, and when this happens, it is usually within the first 2 years. A couple of doctors that I have seen about this told me that after 5 years, the illness may stop degenerating but we cannot expect a remission. Good luck to you! Claire from Canada |
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