What is Success with Botox?


Posted by kathryn k. , Apr 22,2002,18:31   Archive
Hi, I'm new to this, diagnosed tentatively two weeks ago after 5 months of progressive worsening of blinking to right eye closed and left eye almost closed. I had Botox injections the same day. The neuro-opthamologist says my case is "a little off the beaten path" and my response to Botox would help with the diagnostic process, e.g. if I respond then it's probably blepharospasm. I have a followup this week (2 weeks after Botox)and am wondering from those of you who have had Botox what is considered "success." My eyes are more generally open now (which is great), but I still often feel strong spasms and although people tell me they can't much tell (they say I look a little sleepy), to me the spasms feel strong and are very distracting. (It's like a war between the Botox and the muscles.)

Also, almost all along I have noted that when I cover my left eye, they both stop spasming. It happens when I cover my left too but there are still some small spasms. Anyone else heard of this? I appreciate any help. Kathryn




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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by Kelly Saffell , Apr 22,2002,19:22 Top of Thread Archive
Your response to botox sounds alot like mine. Even when the botox is working, I can feel the muscles trying to spasm. It is exhausting and I feel bad but people tell me they can't tell it from looking at me. I have been asked more times than I can count if I am sleepy. I remember in the hospital after Cory was born the nurse was giving me instructions and she said "I realize that you are sleepy but try to pay attention." I only had a 6 hour labor and wasn't the least bit sleepy-it was the beb. While my eyes stay open generally more with botox than without and I don't have the squeezing where it takes 5+ minutes to open them, I still struggle with alot of activities. I am not "normal".
You are right, it is like a war between botox and spasms.
Kelly



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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by Lynn Yarbrough , Apr 22,2002,19:48 Top of Thread Archive
Hi, Kathryn,

Sorry to hear of your problems. While it sounds like you indeed have BEB, there are some signs that it may be something else. At any rate, after two weeks the BOTOX should have maxed out and the next step (after this one wears off) is another, somewhat larger dose.

Botulinum, the base of BOTOX, is scary stuff -- it is the second most toxic stuff on earth, behind plutonium, and most doctors are very conservative in dosing for fear of serious effects. It may take a year or more to find the right dose level and injection sites for maximum effectiveness.

From your description, I would suggest that the Dr. investigate HemiFacial Spasm (HFS), a related condition that is caused by the intersection of a nerve with an artery near the base of the skull. Sounds scary, but can actually be cured permanently with a low-risk surgical procedure, if it is indeed what's happening.

There are also surgical procedures to deal with BEB, but probably should not be considered until it is clear that Botox is not doing the job. They involve removing part of the muscle structure around the eye. As yet I have not had to resort to that, but who knows?

I hope for you that you will be able to attain what I have ended up with after 12 years of Botox: 6-7 months of freedom (I drive and do everything else that's normal) followed by 20 MU of Botox, which is easy to bear and very effective for me.

In the meantime, hang around here and participate. It can be fun and is very helpful in terms of information and emotional/technical support. Everyone here has gone through something very similar to what you have described, and we are all frustrated by the massive ignorance of the press, the public, and even the medical profession about BEB.

Cheers,

---- Lynn




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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by Lyn Patterson , Apr 22,2002,19:53 Top of Thread Archive
Hi Kathryn

Everybody has a different experience, judging by this BB. My injections take 1-2 weeks to kick in then I am almost normal, not quite. After about 6 weeks I can feel some spasms , definitely at 8 weeks and I am ready for the next injections at about 9-10 weeks.

It will take a while, and a caring doctor, to find the best sites to inject and the amount you need for an acceptable result. I find it best to have the next lot of injections before the previous lot has worn off completely otherwise you are back to square one. Now that I have a doctor who will inject me when I feel I need it, the relief alone makes me feel better.

Lyn




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Re: What is Success with Botox?/lyn

Re : Re: What is Success with Botox? --- Lyn Patterson
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 23,2002,10:11 Top of Thread Archive
For sure! It's nice to be able to hold off on them if you can, but when one needs them, one really needs them!



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Re: What is Success with Botox?/WELCOME

Re : What is Success with Botox? --- kathryn k.
Posted by June in Toronto (June Floyd,June in Toronto), Apr 22,2002,21:45 Top of Thread Archive
Welcome to the bb, Kathryn. As Lynn suggested, you might have hemi-facial spasm. We all differ with botox injection side effects and results. I get mine approximately every 4 months now (had it for 7 years and started off at intervals of 6 months) and it takes 4-6 weeks for them to settle down afterwards (I get 90 units between the 2 eyes) - your description of a "war between the botox and the muscles" is how I'd describe it as well. Let us know how you are doing.

June in Toronto (beb/meige)




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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by Delaine Inman , Apr 22,2002,22:07 Top of Thread Archive
I've had several doctors tell me that 95% of those who get Botox have positive results. Now after talking to many people the degree of the positive results vary. I was expecting it to kick in at 7 to 14 days and have no BEB until it began to wear off and not need it for 3 months at least. WRONG in my case. My BEB never leaves, I've met very few who can say it does. After one year of no positive results from Botox I had a partial myectomy. Again I was disappointed the BEB didn't go away, at least for awhile anyway. Then last year I started a low dose of Klonopin and with the surgery, medication and Botox the worst squeezing/painful spasms do let up some for awhile, but my spasms never go away completely. The main things that trigger spasms still trigger them. Many of us have one eye that has been worse from the beginning. Mine is the left eye, the right eye closes and sometimes squeezes, but never with the same forcefulness of the left. I have found a neurologist who watches my spasms, has me raise my eyebrows, squeeze my eyes shut and feels of my face and injects the muscles involved. I have not had ptosis and have had much better results at a much lower dose with her.



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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by Sally - in - Idaho , Apr 23,2002,00:27 Top of Thread Archive
Hi Kathryn,

Welcome to the BB. I hope you will stay around and feel free to ask anything or make any comments that occur to you. We are open to discussing nearly everything and there is always someone around to try to answer your queries.

Botox is limitedly effective for me, in that my symptoms are less with it than without, but I am never symptom free. I have 100 units every eight weeks, with varying results. The neurologist seems to have the sites and dosage pretty well figured out now after nearly two years. I was first put on Neurontin, but that totally knocked me out and I've not tried any other drugs since.

The spasms are always there in the background, just waiting for a stressor to alert them to go into action. At least with Botox, the eyes don't lock shut as completely or as often as without.

Good luck to you. Keep a sense of humor, that will help you as much as anything.

Sally in North Idaho BEB/Meige




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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Apr 23,2002,09:49 Top of Thread Archive
Hi Kathryn, Welcome to the BB. I would like to answer your question about covering one eye and they both would stop spasming. Back in the days when I first started having these symptoms both eyes would be pulling close and I was in constant misery trying to hold them open. Like you I would put one hand over one eye while driving because it did seem to help. I think it is some kind of sensory trick. I though that it was my glasses and that I needed my prescription changed.

Even with Botox I am never symptom free. At times I have thought that it was not working but when the Botox was suppose to be wearing off and my eyes were getting worse I realized that the Botox had lessened the spasms but I was never spasm free. I called my struggle to open my eyes as my fight/battle/struggle because it seemed that I went through all those stages in my battle to open my eyes.

Hang in there - ask questions - we welcome you.

Joyce in NC BEB/Meige/Apraxia? (doctors can't make up their mind about the apraxia)




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Re: What is Success with Botox?/kathryn

Re : What is Success with Botox? --- kathryn k.
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 23,2002,10:20 Top of Thread Archive
Hello kathryn. My full name is kathryn also. My left eye is also worse then the other, sometimes more so. I have done some of the things you describe (covering the worst eye when the spasms occur) and sometimes it helps temporarily. I'm wondering why Lynn says this might point to HFS.



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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by Shirley-Arkansas-USA , Apr 23,2002,16:58 Top of Thread Archive
Welcome to the bulletin board, Kathryn. Others have given you good advice and I don't have a lot to add. Success with BOTOX varies from person to person. It can result in complete relief of symptoms within a few days to only minor relief where it is actually hard to tell if it is helping or not. Success is pretty much determined by several things-expertise of your doctor and allowing enough time for he or she to get the right dosage and sites for you as an individual, how your body responds to the BOTOX itself and the severity of your symptoms and the type symptoms that you have. We're all a little different.

I do question your doctor's statement to you about giving you the injections first and if you respond to them that will determine your diagnosis of blepharospasm. I can't say that I agree with that. BOTOX is going to diminish any squeezing or blinking that you have regardless of what it is caused from. You could just have a dry eye problem that could be treated with drops and this could relieve the spasms. BOTOX is not going to tell you if you have BEB or not.

I also agree that your ability to keep one eye open while covering the other is probably a sensory trick(something that you can do to get your eyes to open). Sometimes eating, talking, humming or touching an area on your face will work.

Again welcome to the bb and ask whatever you like. We do understand.

Shirley in Arkansas




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Re: What is Success with Botox?

Re : Re: What is Success with Botox? --- Shirley-Arkansas-USA
Posted by Ruth Kellogg , Apr 24,2002,22:17 Top of Thread Archive
Regarding the doctor who said that if the Botox worked it is beb--maybe he is looking to see if you also have apraxia. I've had injections from many different doctors over the years, but only one said he wanted to see me after 3 weeks, to see if Botox was working, and if I had apraxia. I have both, and that explained why Botox had only been partially successful.
Others have said that we are all different, and that's true. I was told that some medications (oral) work to contol beb (neurologists do best at monitoring these, rather than ophthalmologists who are not as familiar with meds affecting the nervous system). Several of the prescription meds worked for me; one stopped working after a year; some meds didn't work at all for me, but work fine for other people with beb. A lot of that is trial and error. Hopefully you will get improved results with future injections! Ruth in MA

--modified by Ruth Kellogg at Wed, Apr 24, 2002, 22:18:42




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Re: What is Success with Botox?

Re : What is Success with Botox? --- kathryn k.
Posted by Kathryn K. , Apr 25,2002,09:06 Top of Thread Archive
Thanks to all for your comments and suggestions. The dr. felt I had made good progress with the Botox and did not want to do more Botox because he thought the lids had all they could take. He put the plugs in the tear ducts for dry eye, though, and so they feel a lot better. I really appreciate your comments and support. Kathryn



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