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Posted by: jodiebo ® 11/16/2011, 17:24:09 |
I started being unable to open my eyes two years ago.. got better for a little while so i was able to work and lead a normal life. a few months ago i noticed it was getting worse. left eye would not open at all in the car. took more and more effort to keep my eyes open. now ive tried most pills and did botox twice now with no relief at all. why isn't the botox working on me??? i'm going in for my third injection tomorrow morning. i'm up to 60 injections in the last two visits to the dr. I'm worried i'll be unable to see |
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Posted by: tatia ® 11/16/2011, 19:12:18 |
Welcome to the forum! Sorry to hear you're having so much trouble. I saw your other post on experience project. Are your eyelids squeezing closed forcefully, or just drifting closed? My doctor thought I was complaining about blepharospasm when really I was describing ptosis. My eyelids get so weak I can't hold them open. It doesn't feel like weakness though, I just feel a little tired. If your eyelid muscles are squeezing closed, Botox should be able to help. Some people take awhile to get good Botox results because their doctors need to experiment with the placement of the injections and the optimal dosage. How many units are you getting? How many different shots, in what locations? Some people get better results when they switch doctors. Some people get better results if they take zinc supplements for a few days before injections. In your other post, you said problems were confined to your left eye, and then Botox made your right eye close, also. That, and your young age, made me wonder about the ptosis. You are about the common age for myasthenia gravis to develop. Botox makes the muscles weaker, so if you were already having weakness, Botox would make it worse. Tatia |
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Posted by: jodiebo ® 11/16/2011, 22:57:55 |
Tatia, I only was told it was blepheraspasm months ago. initially another nuerologist pcp and eye dr told me it was stress, nerves, etc. I'm not positive but i think when i drove the left eye was squeezing closed. now the right eye is drifting closed but very difficult to open at all for more than a few seconds. I had 40 injections the first session on the 3rd. then last monday she finished the botox off with 20 more injections. and wants to do more tom morn. noone says ptosis. and i'm afraid to get another dosage of botox because i cannot afford to get any worse or i will be completely blind. the shots were in forhead, eyebrows, and the sides of both eyes. I'm afraid to say the least. i think people think i'm faking because i can at times open my eyes. they d ont realize that is takes all my strength to do so. i just feel alone and afraid.
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Posted by: judith k ® 11/16/2011, 23:48:12 |
Jodie, Sorry to hear what you are going through! I'm just another patient....but from what I've read and heard, it sounds as if you are getting a surprisingly large number of injections for blepharospasm. Doctors have their own ways, but I've never heard of anything quite like this.
I think it would be worth thinking about to ask her these questions before going any further with injections. What does she say about wanting to do more tomorrow, when 60 shots within the last 2 weeks haven't done the trick? Where do you live? What kind of insurance do you have?
It's not that no one has ever been able to have visits so close together...I'm just wondering about all this. I really would ask her (on the phone? or does she have a nurse or a tech you can talk to?) whether this number of shots is typical of her approach, how many blepharospasm patients she's treated, what her rate of success is with giving so many injections. Unfortunately, some doctors still don't know about or recognize blepharospasm, and they may say what you heard earlier—it's from stress, it's a bad habit, see a psychiatrist...and then some people (even some doctors) don't believe it can be much of a problem, because the symptoms can be erratic and sometimes be very subtle, or even absent. That said, I'm not clear on whether the eye drifting shut happened before you had the injections, or after? A droopy lid after injections can be the side-effect of ptosis. "Drifting closed" could be a apraxia; or blepharospasm. Maybe ptosis, sounds a little erratic for that. I'm sure others who are better informed will comment on what you've said. For me, the bottom line right now would be: get the diagnosis confirmed. Ask questions of the doctor. I would myself ask the same questions I suggested above (as well as asking for a diagram of injection sites and dosages).
Keep us posted! Judith K
Modified by judith k at Thu, Nov 17, 2011, 10:43:42 |
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Posted by: jodiebo ® 11/17/2011, 06:11:35 |
if i wrote it made my eyes work i worded that wrong. the truth is the botox only made me worse. i had trouble with the left eye tightly closing but never the right eye. now the right eye closes as well.
as for the botox she is giving me this botox today for free. she is my botox nuerologist, but i also have another nuerologist in that practice which is who diagnosed me in the first place. she isn't putting the injections in the same place at all. on the 3rd she says she did 40. more surrounding he left eye but also quite a few in the right. the second round was four days later when she still had some of my botox left. that was 20 injections only to the left eye. she goes in forhead, eyebrow,sides of my eyes near the temple, and on the left eye riht by the tear duct. which swelled up a lot. honestly i don't know if she knows what she is doing or not. she claims that she just feels she didn't give me enough botox and wants to do a lot now because she thinks more will help more. she doesnt understand why it isnt working. and she does treat many people. Im also on artane 4 pills a day. nothing is helping so far and i'm getting the injecions at 8 this morning. I'm afraid not to do it because as it is right now i can't see crap, cant drive, and may need short term dis. I know it was starting to impair my daily activities befor the botox, but after the botox it has whiped me out.
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Posted by: Bammaw ® 11/17/2011, 07:32:47 |
Sorry to hear you're having so many problems. Many of us have had problems with botox......many are doing just fine with botox.
One doc I went to did a tesst to see if I was producing antibodies to botox........I wasn't.........but it just wasn't working and I was getting 100 units. Now I'm with a neurologist and have also developed meige syndrome........so I'm getting 200 units........ The last 2 times I got Xemomin.....another form of botox....the first time it worked pretty well. The last time it did not!!! Now I'm going for Myobloc in December.........not looking forward to that at all!! The advice you've been receiving is correct......ask lots of questions........where you're being injected, etc. I've never heard of going back every few weeks for more injections. Maybe it's time for another doc.......I don't know where you live but please contact the people at the BEB foudation for doctors in your area that treat blepho...........and make sure that's what you have. Best of luck to you and keep posting to let us know how you're doing!! Good luck!!!! Sandi |
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Posted by: Garland ® 11/17/2011, 09:11:53 |
I don,t post very often,but I do read the Bulliten Board. From what I'v read about your shots they have been given in the wrong place. I had the same problem wtih shot placement when I first come down with this miserable disease. They are being given to close together. Shots in the forehead and eyebrows will cause your eyes to close as these are the nerves that closes your eyes. Find a Doctor that knows about BEB and is interested in properly treating you as a patient.This is going to take some time to wear out of your system while you find a Doctor. |
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Posted by: tatia ® 11/17/2011, 09:26:50 |
I'm guessing that when you say "injections" you are actually talking about "units." If she gave you 40 injections, that means she poked you with the needle 40 times. 40 units would be the dosage of Botox she used. If you didn't originally have any problems with your right eye, I don't understand why she gave you injections in that eye. If the Botox caused your right eye to close, that would be a ptosis (regardless of whether or not the left eye is blepharospasm or ptosis.) I hope she doesn't give you more Botox in the right eye today. What kind of doctor are you seeing? Have you considered going to see a neuro-opthalmologist? Tatia |
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Posted by: judith k ® 11/17/2011, 11:06:45 |
Tatia, Hadn't thought of that!
If what's meant is that the doctor gave 40 UNITS, and then, two weeks later, gave another 20 UNITS, that would make sense and be in the ballpark. Maybe maximum of 10 actual INJECTIONS were given. But then we still don't know about where in each of the sites; or whether the botox was given symmetrically (might not have been?); and, as you asked, why the injections were given in the right eye at all. Wasn't entirely clear to me whether the right eye problems started completely after the first 40 (shots? units?) or not. If so, I agree with you, it would most likely be a ptosis if it happened after the injections. Judith K |
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Posted by: jodiebo ® 11/17/2011, 14:42:15 |
She only gave me four shots into the eyelid of my right eye. I'm afraid to change drs because i now have to get them to fill out short term dissability for my job and what if they wont if i change drs? \my problem is i know very little of this beb. so i dont know if she knows what she is doing or not. i did ask her and she said she gives botox quite frequently and noone has had the experience i'm having. I'm very afraid and angry. i cannot afford to lose my job but i assure you i was somewhat functional until the botox. my left eye closed in the car but i could manage to drive with it that way and i could hold my eyes open when i had to at my job. i thought the botox would fix it. just make me be able to open the left eye while driving. now both eyes are heavy and week. i thought botox almost forced them to be open and that isn't the case.
don't know what to do jodie |
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Posted by: tatia ® 11/17/2011, 20:13:43 |
Did she give you shots in only your right eye? Did you mean to say the right eye? Before Botox, when your left eye squeezed closed, what was your right eye doing? Botox does not force the eyes open. Botox weakens muscles. If your eyes close because your "blinking muscles" are being too hyperactive, Botox makes those blinking muscles weaker to settle them down. If your eyes close because the opening muscle is too weak to keep it open, Botox won't help and might make it worse. Sometimes when my eyes are closing because of weakness, it feels like they're squeezing closed, because I'm getting cramps in the weak muscles trying to hold them open. I spent 4 years insisting to my doctor I didn't have weakness, and that just set back my treatment. Sometimes conditions that cause eyelid weakness can eventually cause blepharospasm as a side effect, and that just makes things extra complicated! Of course, I don't know if your eyes are spasming or if they are weak. Be very analytical about yourself. Also, see how you're doing in a few days. If the extra Botox helps, then it's probably spasms. If the extra Botox makes you even worse, it could be that you haven't found your optimal injection pattern yet, but consider other possibilities. Ask about myasthenia gravis. If it was truly only on one side originally, ask if you could have a nerve issue instead of a brain issue, or an atypical migraine syndrome. Ask your doctors if there's anything else it could be. Tatia Modified by tatia at Thu, Nov 17, 2011, 20:31:35 |
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Posted by: jodiebo ® 11/18/2011, 18:18:22 |
well dr said its blephorospasms. so i don't know. I notice the injections into my right eye lid, four of them did nothing to help at all. dr seems puzzled as to why. the left eye does open somewhat now but its very very weak. and i have to force it open. i'm angry and disappointed because i thoght the botox would help. got my hopes up and now the botox made me way worse. that's friggen terrible. i'm taking the artane but for example yesterday i laid on couch at 1, slept til ten at night, went up to bed and slept till ten this morning. it is making me very tired. when i force both eyes open it's hard to see. i wonder if that is because it has been so long since they both were open at the same time. i'm getting very very depressed
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Posted by: jodiebo ® 11/18/2011, 18:20:21 |
oh yeah, before the botox my right eye worked most of the time normally.
my left eye squeezed shut 70 percent of the time,and always in the car, driving or not. i got used to seeing with just my right eye. now my left eye is the one that's opening just a wee little bit and the right is closed |
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Posted by: noonsmom ® 11/17/2011, 22:10:30 |
While we're all working out the injection issue - you still have the work issue to resolve. Please think of trying tape. Leanna S. is our expert on keeping the eyes open with surgical (I think it's Nexcare) tape. Maybe she'll post here, but in the meantime, here's how it works: Take a piece of tape about 1 1/2 inches long, and place the bottom part just over the lid. Angle it VERTICALLY toward your hair and bring it up OVER your eyebrow toward your forehead. Pull slightly and tamp down. That should keep the lid open. Use vaseline or other gentle cream when it comes time to remove the taope.
Leanna, are you there? Maybe you can describe it better. Or maybe jodie can find old posts on the blog. Marcia |
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Posted by: noonsmom ® 11/18/2011, 20:23:47 |
Sorry Deanna. My neighbor is LeAnna and I just spoke with her, so I made the slip. Anyway, Jodie, Deanna is super experienced with Nexcare tape and has posted several times on this site. I'll see if I can find anything on the subject. Taping eyes open is a godsend. It doesn't look gorgeous (unless you're Deanna and artfully apply makeup over the tape) but most of us use dark glasses so who can see the tape job? Marcia |
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Posted by: judith k ® 11/18/2011, 23:20:01 |
Jodie, Sorry you are feeling low.
Did you find out how many units (and who prepares the toxin, and was it prepared just today)?
I hope this 3rd time will be the charm. But if not, I urge you to get another opinion! Take care, Judith K |
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Posted by: grannydriver ® 11/20/2011, 14:42:59 |
Jodie, I am so sorry you're having such a rough time. I have only had one round of Xeomin injections and I, too, feel that they were not very successful. I am due for a second round on 8 December and am hoping for better results. I also use the Nexcare flexible tape and couldn't survive without it! I have found that placing the tape strip just above the eyebrow and up towards the hairline (look "surprised" while applying) is effective for me most of the time. I wear bangs, so the tape is hidden. I aurely will be thinking about you as you "walk this road."
~Cydney in Germany |
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Posted by: kenavis ® 11/20/2011, 16:29:49 |
Jodie hope you get doing better now
kenavis |
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Posted by: pp ® 12/04/2011, 13:31:21 |
Botox does not work for me either. At one time I had 90 units in my right eye which is the worst and it was open for two weeks. Doc says I have Apraxia and botox does not work for apraxia. |
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Posted by: jodiebo ® 12/04/2011, 23:27:03 |
so if Botox doenst work for you what do you do for your eyes?? |
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Posted by: pp ® 12/07/2011, 10:44:45 |
Well, Not much. I am a Realtor, and my husband has to drive me around and when I do contracts,, I have to hold my eye open. Been to UC Dacis, UCSF, had surgery there, nothing works. My medical doc gave me 90 units one time in the most resistent eye and it stayed open for two weeks, but the eye doc I'm going to now, says that is too much. I'm between a rock and a hard place. |
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Posted by: Jaye Denman ® 12/05/2011, 12:17:13 |
I was diagnosed with bilarateral BEB nearly 20 years ago and went through a great deal of agonizing at first. It also took a while for the Botox to begin helping me to the max, as my BEB was severe and resistant. Please be assured if you are patient (and I realize it's hard to be when you're going through so much unpleasantness), things are likely to get much better. I can recall having to drive while holding one eyelid open with the hand not on the steering wheel. There were some hair-raising close calls during that time. But it did get better. Any time you're in the sun (or even outdoors on an overcast day), you need good sunglasses with sides that shut out the glare. Over the years, I've often worn large opthalmogic sunglasses over regular sunglasses! Hang in there! It's early days for you and BEB, and the situation will probably begin to improve in the coming months. |
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Posted by: pp ® 12/07/2011, 10:46:38 |
Not a newbie, been going through this since 2007 |
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