Posted by: Lynn Yarbrough ®
07/26/2003, 12:41:05
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Hi, Rita,I don't mean to rain on your parade, but don't be too hasty in claiming "remission" just yet. Rejoice in your current state, but expect that the "blephs" will return after a time and you will have to resume the unpleasantness and treatment again -- and again -- and again ... If you are as fortunate as I am to have nerves that regenerate slowly, as mine do, so that six months of relief is possible, then we can rejoice together. But it was not always like this, and may get worse rather abruptly. Cheers, --- Lynn
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Posted by: rita ®
07/26/2003, 15:13:20
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Hi Lynn
Well sorry to say, but you did rain on my parade! I cried. And I know you did not mean to hurt my feelings...
Why do you think I wont stay in remission?? I only had bleph..not meige or aparaxia..
Bleph was bad enough..
Are you saying that you had 6 months of relief and it came back?
Take Care Rita
Modified by rita at Sun, Jul 27, 2003, 12:09:37
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Posted by: Lynn Yarbrough ®
07/27/2003, 17:42:14
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Rita, Complete remission from BEB is _extremely_ rare -- I've only heard of one or two cases -- and return of the disorder is the rule rather than the exception. As for myself, I have worked for 13 years at trying to get my interval of reasonableness from three months (which is typical) out to 6-7 months. That is also rare, and I believe due to my slowness in recovering from the effects of the Botox. I am genuinely sorry to have hurt your your feelings, but I think most folks here will agree that it's better to face the realities of our condition than to be repeatedly disappointed. Nearly all of us have had to make serious adjustments to our life patterns because of BEB. It's hard but not impossible. I'm sure you can do it. I'm mostly sorry that your Dr. didn't explain BEB in sufficient detail that you could see this coming. Be strong, --- Lynn
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Posted by: rita ®
07/28/2003, 12:23:54
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HI Lynn
Thank you for your concern..but I am trying to think positive and believe that it wont' come back..and I am one of the lucky ones...if I don't think this way my severe anxiety will soar to the sky and I will be in worse shape mentally..
Although I can be honest and say that when I wake up ..my eyes are starting to blink again..but it goes away...
Take Care Rita
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Posted by: Shirley-Arkansas-USA ®
07/28/2003, 10:45:56
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Hi Rita,
There are actually two "kinds" of blepharospasm. Primary Blepharospasm (more commonly referred to as Benign Essential Blepharospasm) is what most of us on this board have and Lynn is correct in his statement that most do not go into remission...a small percentage do, though.
The other form of Blepharospasm is Secondary Blepharospasm. It is caused by something specific like an eye infection or irritation or dry eyes or some medications or an injury, etc. In many of these cases of Secondary Blepharospasm, if the cause is corrected or eliminated then the blepharospasm is likely to just go away. Best of luck to you. :-)
Most of us have done quite a bit of crying about this. It isn't fair but I certainly hope that you are one of the lucky ones and will never be faced with this problem again. If it does come back, we are always here for you. Shirley in Arkansas
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Posted by: rita ®
07/28/2003, 12:06:04
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Hi Shirley
Thank you for caring..
It is much appreciated.
I for one am going to enjoy the fact that right now I am better and maybe I am one of those lucky people where it won't come back..I can't dwell on the thought that it will come back.I also know that my horrible anxiety disorder will never go away..but I am so relieved that it is better for awhile...although I do have my moments....Take Care Rita in Washington State..
Modified by rita at Mon, Jul 28, 2003, 12:09:14
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Posted by: Keith_P ®
07/30/2003, 10:03:50
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Rita,
I am so happy to hear about the remission or complete healing of your BEB! I believe you can be one of those that never gets it again!
I also have had massive anxiety my whole life, some years very bad, others not so bad. I think the BEB is somehow all related as well.
My spasms were never severe, but very distracting, especially in social situations but have gotten so much better!
I think we all have to be careful of what we tell newly diagnosed BEB sufferers that find this site as well.
I know for me, when I came here, after hearing all of the worse case scenarios, I thought I was doomed for life! Many people told me eventually my eyes would slam shut and I would be disabled! I was petrified but this hasn't happened yet! My eyes have gotten so much better, no botox, and once in a while I take a Klonapin which stops the spasms completely.
Forgive me for lecturing, but, maybe we shouldn't give all of the grim diagnosis to someone who just found us, it really scared the heck out of me!
Just my thoughts....
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Posted by: June in Toronto ®
07/30/2003, 10:35:33
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Hi Keith, I've been posting on this bb for a few years now and I have never seen anyone state (especially to a newcomer) that their eyes "would eventually slam shut". That does happen of course, but posters usually say "how different everybody is and how everybody varies with botox and medication and to give the doctors time to find the right fit for them". Initially I think newcomers are just given general information about getting a good movement disorder specialist, and how to deal with dry eyes and to try and destress their lives as much as possible. Obviously if we are asked a specific question then perhaps the truth (from the reply) is not what they wanted to hear. We can't lie about our own experiences with this disease/disorder though. I agree with you that doom and gloom is not what a newcomer needs/wants to hear and I don't believe that is given.June in Toronto who sees things in a differnt light from Keith
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Posted by: rita ®
07/30/2003, 11:41:01
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Hi Keith
Thank you so much for your kind words..I know stress can make bleph. worse,but not cause it..I am happy for you also that your eyes are better...hope they stay that way forever and ever..
Hi June...
I do agree that newcomers to the beb are not told scary things..just caring and kind words...When I found the beb ..I was so happy ..somewhere to express how I felt and vent...Helped me soooo much..Thank you both..Rita in Washington State
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