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| Are these side effects consistent with botox treatment? |  | ||
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Posted by: Chrisco ® 03/11/2013, 19:20:55 |
Hey all, I have had botox treatment by Dr. Consky in Toronto over 3 weeks ago for blepharospasm. However, it has had no effect and my eyes still remain closed most of the time. The only difference is that now my left eyelid droops and both my eyes "jitter" back and forth rapidly (though ever so slightly) when trying to focus on something close up (distance of looking at a magazine or computer screen), resulting in double-vision. Is this normal? Interestingly, as a follow-up to my earlier message about the Chinese herb Yokukansan, my eyelids, nose and mouth no longer twitch / spasm after taking 7.5g daily for a few days. I'm still on it. Note that this was well before being treated with botox. Perhaps I just hadn't paid attention to the missing spasms, as my eyes still remain closed. Other doctors suggest I may have apraxia considering this as well as the failed botox treatment. So... are the "jittering" eyes a typical side effect? Dr. Consky had injected botox in my lower eyelids near the nose, above the brow, bridge of the nose, ends of the brows, and other end of the eyelids. Also, do other blehparospasm patients out there experience no spasms, but still closed eyes? Difficult to explain, as I am able to open my eyes, just not for an extended time (they gradually begin to squint and squeeze close ever so slightly. I typically walk around looking through narrow slits.). So frustrating... Thanks all for listening. Best,
Modified by Chrisco at Mon, Mar 11, 2013, 19:38:33 |
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Posted by: bluebird ® 03/12/2013, 10:16:44 |
I am answering this, not because I have answers, but I don't want it to get lost. This will move it up in the sequence. Your double vision can be the result of misplacement of the Botox shots. That can also cause ptosis. I cannot comment on the "jittery" eyes. I also have apraxia and, before I had surgery, my eyes would just close and not open until they were ready. I never had hard spasms as some people describe. This "stuff" is so different. I would try to find someone who has used docs in your vicinity and see who they recommend. It takes the right doc and takes them a while to get it right. |
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Posted by: Chrisco ® 03/12/2013, 17:15:57 |
Bluebird, thank you so much. You're correct; everyone is so different in symptoms and what works for them. Which is what makes this web forum so terrific (sharing experiences of others). I will look into ptosis, but most likely the botox is causing the problem as I had not experienced the issue before. How are you coping with the apraxia? Best,
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Posted by: bluebird ® 03/12/2013, 18:30:17 |
Botox in the wrong place causes ptosis. It should get some better before long if that is the problem. I had a myectomy for the apraxia. It is not a "solve all" procedure, but for me it let me return to open eyes. Now I have problems with eyes that do not close completely and are thus dry. I also get Botox every two months, but at a very low dosage. It works for me, but took a couple of years to get to the point that it hasn't been changed in a couple of years. My problems started around 6 years ago. I did not drive for over 18 months. Now I do just about what I want. I have problems with different kinds of lighting and dry eyes. Somewhere on this bulletin board is a check-list for newbies. It gives all the tips that people have come up with to help those who are just starting on the journey. You need to be taking pictures or videos of your eyes when they are bad, keeping a daily diary and taking these with you to the doc. If he is a good one, he will be interested in seeing them. There are other ideas as well. Peter, if you see this, tell people where to find the list. I did not easily find it. |
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Posted by: Moderator-JB ® 03/12/2013, 23:04:55 |
Bluebird, This may not be the list you were thinking of but it will help. ~ Judy Related link: http://www.blepharospasm.org/blepharospasm-faq.html |
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Posted by: Moderator-JB ® 03/12/2013, 23:11:57 |
Here is the correct one. At the top of this page click on
Judy |
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Posted by: pdb ® 03/12/2013, 23:18:15 |
That's the one Peter |
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Posted by: lisao ® 03/12/2013, 10:31:11 |
This is probably not relevant, but I have had problems with jittery eyes. With me, the jiggling/vibration happens when I move my eyes up and hold them there (looking up without bending head back). It used to happen every time I did that. Now it just happens when I am very tired/wired. I have never had botox, so that wouldn't be a factor in my case. |
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Posted by: Chrisco ® 03/12/2013, 17:18:52 |
I'm sorry to hear that, but glad to know that (by the sound of it) it's subsided slightly.. When it happens, it's noticeable, right? With things like this, I sometimes begin to feel like it's all in my head until my wife visually confirmed it. All the best,
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Posted by: lisao ® 03/12/2013, 17:43:54 |
Absolutely noticeable, yes. This was/is NOT in my head. I have never asked my husband to look because I never doubted it was really happening. Since it only occurs when I roll my eyes upward (that is, I look up without bending my head back), it doesn't happen that much in an average day. But it happens even when I roll my eyes up with the lids closed, so I guess it is not related to focusing as yours is. Mine happened now and then for about a year. Then I went to Seville last November to see Dr Farias for neuroplasticity therapy. The first thing he told me was I HAD to start sleeping 8-10 hours a night and napping whenever tired. During the week I spent there, I slept a lot and was stress free. Coincidentally or not, the problem seemed to diminish to nothing. I was also doing eye exercises with Dr. Farias all week, so maybe they helped, too. After I came home and got back to a less restful, more stressful life, I noticed the problem would reappear occasionally, but much less often and less severely. So, for someone with my exact problem, I would advise getting a lot of sleep. But the timing of your problem would make me think it was due to the botox---perhaps a very rare side effect. If so, I assume it will be temporary since the botox will dissipate. Good luck! |
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Posted by: June in Toronto ® 03/12/2013, 10:50:37 |
I wonder how many units Dr. Consky gave you in total? He most probably started out low and will increase and change injection sites as well (keep a diary of your daily problems to discuss with him). Did you call him back after 2 weeks (after the injections)? He used to request this so he knows how you are doing. I've had the injections for 20 years now so can't remember (senior as well!) how I was after the first few. I trust the Yokukansan herb isn't in conflict with Botox? Best wishes - you are good hands with Dr. C. imho. June in Toronto |
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Posted by: judith k ® 03/12/2013, 14:02:36 |
It's definitely normal that many people either don't have results, or have
less-than-ideal results, when first treated with botox. As June said, your doctor probably started low. Many doctors do that. I'd also like to know how many units he gave you. If you don't know, you might phone his office and ask.
Judith K
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Posted by: Chrisco ® 03/12/2013, 17:26:01 |
Judith, Thank you! I am following up with him regarding the units. I suppose it's somewhat reassuring to know that not everyone will respond well to the treatment, to avoid disappointment. Thanks for your help. All the best,
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Posted by: judith k ® 03/12/2013, 19:35:29 |
Hi, I hope we are both talking about avoiding disappointment AT FIRST! As others have said, the dose and injection sites can make a big difference.
With some there may be a quicker turn-around.
There seem to be people who stay on the same dose for a very long time, and the treatment that way is very stable. In my experience—I was at 90 units for 2 cycles, then at 100 for about 3 years, then back to 90 for a couple of years, then 85 for a couple of years, and now—as of my last round of injections—at 80.
Judith K |
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Posted by: Chrisco ® 03/12/2013, 17:23:52 |
June, Thank you kindly for the reply. I honestly had not thought to ask of the injection amount of location. New territory for me, though now I'm catching up greatly thanks to everyone here. I have obtained his injection chart and have a follow-up appointment booked (been 3 weeks). I will request the units he's given and be sure to keep a diary of it. He's excellent, and pretty the expert to see for this condition... so I'm hopeful I respond well to another treatment the next time. Best,
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Posted by: VesaFinland ® 03/12/2013, 16:23:56 |
I have got Botox \ Xeomin injections for a year now. So far the treatment hasn't work as well as expected. I have Had problems ofkeeping my eyes open specially at the end of treatment period. As you, I can keep my eyes open for a short time. I myselff think that I might have some degree of apraxia. I got today the injections, 30 units each eye (bigger dose than last time) and now my eyes feel very good. It may be also for a question of amount. |
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Posted by: Chrisco ® 03/12/2013, 17:13:01 |
Hi Vesa, Going into this, I honestly had no idea that I should be aware of the unit count or that injections at the beginning may be relatively minimal. I'm excited, as today I was able to keep my right eye open for some time, though my left remains closed. I'm happy to hear that today you're doing much better! I will follow up with Dr. Consky. Thank you for your reply. |
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Posted by: Bluebird ® 03/13/2013, 14:56:39 |
In case you missed the added posts above, go to the Welcome to Newcomers and about half way down is a link to a list of suggestions you might find useful. Thanks to Judy and Peter for telling us the location. |
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