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Posted by: jmar10 ® 09/13/2003, 11:03:50 Author Profile Mail author |
I went for my first specialist appointment last Wednesday 9/10. The Dr.'s resident thought I an experiencing the beginnings of blepharospasm but the Dr. said that my symptoms were not consistent with BEB because I do not experience the squeezing. (my eyelids do a sort of fast blink/tremor when I am driving). Anyway, He didn't think Botox was warranted since it has so far only happened when I am driving. And I had pretty much come to that conclusion myself. So, I guess I'll just have to wait and see if it goes away or gets worse. I am kind of bummed because not being able to drive out of my little town is very inconvenient. And not having a definite answer is also frustrating. But, over all I consider myself lucky that so far my symptoms are only an inconvenience and not debilitating. Thank you all for your support and information
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Re: First Dr. appointment Re: First Dr. appointment -- jmar10 Top of Thread Archive
Posted by: Delaine Inman in TN ®
09/13/2003, 14:51:33
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Re: First Dr. appointment Re: Re: First Dr. appointment -- Delaine Inman in TN Top of Thread Archive
Posted by: Jean G. from SC ®
09/13/2003, 17:14:27
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I went for a checkup in Dec. of 2002. I told my neurotologist about the blinking. He didnt't seem concerned but told me to see a neurologist.
I saw a neurologist in Feb. 2003. He noticed it a bit and I told him my lip was twitching when I laid to sleep (left side, same side a surgery). He didn't think it was surgery related but since it involved the 7th and 8th cranial nerve, I think differently. But I'm no doc.
He told me to go off Zoloft and start Klonopin. Going off Zoloft didn't make a difference and I was only taking the Klonopin to sleep, so I was fine during the morning. He wanted me to eventually be taking Klonopin3 or 4 times a day. But, I didn't want to feel like a Zombie. He said some people do quite well on the Klon. My spasming got progressivly worse and when I went back in June I received the Botox around the eyes and one side of my mouth. He says I have Meige too.
The Botox lasted about 11 weeks, now I notice the spasming again Bright lights are a bummer and by evening I can barely watch TV. If I stay in most of the day I do pretty good.I am going for the Botox again Sept 24. I developed ptosis the first time around at about the 9th or 10th day. He was surprised when I told him that the other day. The dosage was very low. So he will place it in a different spot next time.
Instead of Zoloft now, I am trying Lexapro. After having gone through breast cancer 13 yrs. ago (I am fine now) Then the brain tumor, now this blephro. I was really down in the dumps. I didn't feel like doing anything. Hopefully my mood will be better, it stinks living like this. I hate when people say, well it could be worse! Doncha think I know that!
Jean G. Greenville, SC
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Re: First Dr. appointment Re: Re: First Dr. appointment -- Jean G. from SC Top of Thread Archive
Posted by: Delaine Inman in TN ®
09/14/2003, 07:46:35
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I couldn't take the klonopin in the dose ordered but I cut it in half and some have to cut into 1/4 tabs they are so sensitive to it....but it has been a life saver to me once I got the dose adjusted to 1/4 mg every 4 to 6 hours. When it wears off my eyes slam shut no matter how well the Botox is working.
Hope things get better soon.
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Re: First Dr. appointment Re: Re: First Dr. appointment -- Jean G. from SC Top of Thread Archive
Posted by: jmar10 ®
09/15/2003, 10:10:02
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You have been through more than your share. I hope things get better for you soon.I certainly didn't intend to upset anyone. The people on this board certainly already know how bad things can get.
If my eye problems get worse, I worry about how it will affect my children who are 5 and 9 years old. Being relatively new to this community I think my family and I are only just beginning to appreciate how this condition may affect us.
Peace to you,
Janice in TN
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Re: First Dr. appointment Re: First Dr. appointment -- jmar10 Top of Thread Archive
Posted by: Rita Molnar ®
09/14/2003, 03:21:48
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Your note reminded me of how my BEB and Meige began--of my wondering what was happening to me--of all the doors I knocked on before someone would recognize that I needed help.
Before my diagnosis, I remember that I began even to doubt my sanity because well-meaning people shrugged their shoulders and said, "you look alright to me"...I remember thinking that it was only my imagination, or maybe something I was causing myself to do...I remember believing that one day I would wake up and it would go away...I remember trying every damned thing I could think of to help myself (behavior modification-meditation, etc)
I hope you don't have BEB. But I also hope you go a little further to try and find out if you do. Because, if you do have BEB, I think it is wise to address it early, before it gets to be debilitating, like mine finally did.
Maybe your doctor is taking a "wait and see" attitude because you indicated to him your symptoms weren't particularly troublesome, and if you did, maybe it's because you have some doubt in your mind, like I did. Perhaps you think there's something you can do to stop it, or maybe you think it will go away by itself. If it's BEB--trust me--it won't.
I'm not a doctor, and I'm not trying to diagnose you, but what's going on with you certainly sounds familiar to me. And, it sounds to me like you really need an answer. After all, you wouldn't have gone to a doctor in the first place unless you were troubled by your symptoms.
Like Delaine, I also think that you should consider another doctor's opinion. And my suggestion is that you don't wait too very long.My BEB and Meige started out only as a minor annoyance. But it developed into something that was consuming me. Once I got to that point of panic and frustration, it became difficult for me to even explain to a doctor what was happening...When I reached the point of bumping into walls when I was walking, and having to hold my hand to my face when I was driving, I recognize now that, I could have caused serious injury to myself or others in that state.
Best wishes....
Rita in New Jersey
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Re: First Dr. appointment Re: First Dr. appointment -- jmar10 Top of Thread Archive
Posted by: jmar10 ®
09/15/2003, 10:15:33
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If I were to get botox now while the spasms are only occuring during driving, would it stop the BEB from getting any worse than it is now or would it simply stop the spasms for now and the BEB may or may not get worse?
Thanks,
Janice in TN who really thinks she needs a vacation!!!!
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Re: First Dr. appointment Re: Re: First Dr. appointment -- jmar10 Top of Thread Archive
Posted by: Lynn Yarbrough ®
09/15/2003, 12:58:37
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>If I were to get botox now while the spasms are only occuring during driving, would it stop the BEB from getting any worse than it is now or would it simply stop the spasms for now and the BEB may or may not get worse?<
I have had BEB since 1960 and used Botox since 1990, and studied the condition a lot over the years.
I'm not certain, but I believe that (barring a massive Botox overdose) the BEB is going to get worse before it gets better. If administered accurately, it will probably stop the spasms for now (although it appears not to work for some patients) but AFAIK won't affect the future progress of the condition. I hope I'm wrong, for your sake.
At any rate, driving with this condition is definitely dangerous and I strongly advise against it. I know it's a major adjustment; I couldn't drive when we had our 2nd child and my wife had to drive us to the hospital while having contractions. But I also have heard (here) of people who drove into other cars while spasming. The possibility of killing someone is just too high a price to pay.I'm sorry to be such a downer right now, but be assured that you can regain control of your life; it's just going to take some adjustments.
--- Lynn
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Re: First Dr. appointment Re: Re: First Dr. appointment -- jmar10 Top of Thread Archive
Posted by: Rita Molnar ®
09/15/2003, 16:16:05
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I agree with Lynn--I don't believe the Botox can protect you from getting any worse. BEB seems to have a mind of its own regarding how and when it's going to "attack". No matter what you do, it MAY worsen for you, but it is ALSO possible that it will never get any worse than it is right now. Only time will tell about that.
HOWEVER....We all know that stress, while not the cause, certainly exacerbates the problem...and if you allow it to go its course without having at least some amount of control over your circumstances...that could become very stressful for you...I know that it was for me. My stress was relieved with my diagnosis alone, and then, finding that Botox offered sufficient relief, relieved even more. Having my stress relieved contributes greatly to the effects of the Botox.
My spasms at first were only mildly annoying while driving...then they became worse and I was actually resorting to scotch-taping my eyelids so they would stay open. At that point, I became fearful of creating an accident and maybe killing myself or someone else. Once I was diagnosed and the began the Botox injections every 3 months, I found that I was able to drive safely, without serious spasms (most often with none at all) for 2-12 months out of the 3.
Motion of any kind causes spasming for me. Driving...being a passenger in a moving vehicle...looking at someone while they're talking to me...walking... During the last 2 weeks when the effects of the Botox is wearing off, I not only stop driving...but I avoid social events, and even walking is a problem, because I bump into walls. Yet, while the Botox is working, my eyes are open wide, and people have told me that unless they specifically watch for spasms, they can't even detect any. With Botox my confidence level is way up. Also, since I began the Botox injections, my BEB and Meige have not gotten any worse.
I know that other people have not had the excellent results from Botox that I've experienced...but you don't know until you try. I hope you can manage for a 2nd opinion, so you can at least be comfortable knowing what it is that you're experiencing.
Best Wishes...
Rita in New Jersey (bracing for Isabela...but if I can handle BEB and Meige---heck, a hurricane is NOTHING!)
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Re: First Dr. appointment Re: First Dr. appointment -- jmar10 Top of Thread Archive
Posted by: jmar10 ®
09/15/2003, 10:17:51
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If I were to get botox now while the spasms are only occuring during driving, would it stop the BEB from getting any worse than it is now or would it simply stop the spasms for now and the BEB may or may not get worse?
Thanks,
Janice in TN who really thinks she needs a vacation!!!!
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Re: First Dr. appointment Re: Re: First Dr. appointment -- jmar10 Top of Thread Archive
Posted by: Delaine Inman in TN ®
09/15/2003, 17:01:35
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