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Posted by: j_norton ® 01/02/2014, 06:59:31 |
I reviewed the resources on this site and become aware of conditions that I have not seen discussed much here. I noticed that there are two general symptoms in BEB; one is blinking and the other is eyes closed. The eyes closed kind is called Apraxia of the lid opening (ALO). While the blinking kind is helped by Botox, the ALO kind generally, is not. Am I getting this right?
In my particular case, I have what appears to be ALO. I do not blink so much as have difficulty holding my eyes open. It feels much more comfortable to just keep them closed. If I force them open using my forehead muscles, they drop shut within a couple of seconds. I have had 3 sessions of Botox, with the dosages totaling 30, 50 and 100 units and no apparent improvement. The doctor refuses to continue saying that he does not think Botox will help. I would like to hear from any of you who have ALO and your experience with injections. Have any of you been formally diagnosed with ALO? Thanks for posting. |
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Posted by: pdb ® 01/02/2014, 09:45:33 |
I think you are traveling along the right lines in your analysis, though many people seem to have a combination of squeezing of the eyelids (more a spasm than an involuntary blink) and the inability to open them when the spasm concludes, along the lines of ALO. So I'd add spasms to your blinking and eyelids closed description of chief examples. Typical ALO is a situation where a person on command cannot open their eyelids even though there is no sense of a tight muscle spasm holding them closed. Injections in the upper lids, in the inner and outer corners of the lids, close to the lash line are said to be the best locations for Apraxia of eyelid opening. The generally accepted wisdom seems to be that if that fails, upper lid myectomy surgery is the next step, and in the long run potentially a frontalis sling procedure. I'm neither advocating those steps nor opposing them, just trying to reflect what one commonly hears and reads about the topic. I can say that I've had periods of ALO, as in inability to immediately voluntarily open the lids after a spasm, but consistency isn't a characteristic of my blepharospasm, and I'm not a case of pure ALO. Peter |
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Posted by: pdb ® 01/02/2014, 12:39:31 |
There is a response to a question about Apraxia in the BEBRF Newsletter that will be sent to subscribers in the near future. It expands and clarifies some of the things I've said above. Look out for it. Peter |
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Posted by: RipVanBlinkle ® 01/11/2014, 20:49:03 |
Sometimes I get to the point that it looks like I'm grimacing in pain my eye lids shut so tight. I can ward it off sometimes by vigorously massaging my upper eye lids back and forth with my middle fingers while keeping my eyes open, to relax my eye lid muscles, and then other times it's impossible where I have to lay down and take a nap for a while. I'm certainly going to try those fl-41s though. |
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Posted by: Donna R ® 01/02/2014, 09:57:14 |
j_norton......Sounds like I may have similar symptoms. I do not have blinking and my eyes don't clamp shut. My eyelids just want to shut and I have to constantly try to keep them somewhat open. The only comfort is when my eyes are closed. I have been having Botox for the past 2-3 years now. I do not get much relief from the injections.....but I know there must be some kind of relief even if only slight .....because I keep going back every 3 months. I have read that some of the people on this site do have great results from Botox. I know I should be thankful for the little help that I do get from Botox.....I just wish I could get better results. It could be as you mentioned in your post that ALO is generally not helped by Botox and if that is what I may have that could be why the Botox does not help much. Thanks for your post. Donna R. |
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Posted by: sue in orlando ® 01/02/2014, 11:56:43 |
HI, I have that too. My eyes seem to close at will and then I have to try to mentally open them. I had 2 rounds of botox and to me, I feel like it worked pretty good. it was not perfect but it helped, the problem with me is that the botox gave me severe dry eye. so when I went to another doctor, he told me we had to deal with the dry eye first and I have been on retasis for 5 months now with no botox. Ever since I had botox, my face muscles seem to twitch also. that did not happen before botox. When my eyes close now, I have decided to mentally not freak out and decided to calm down and easily open them, then I have been doing those lazy 8 exercises, especially on a "bad" eye day. I find that the exercise has helped a little. I try to mentally take control. My husband says my eyes are better now than when they were on botox, but I am not sure about that. I am just waiting until the end of Jan. to make a decision. I am still driving because I have to work. Driving is my biggest challenge and outdoor activity. I am pretty good inside. by the way, I had the lowest amount of botox given to me and it was pretty good for 3 months. |
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Posted by: pj ® 01/02/2014, 13:35:39 |
Some of the terminology is baffling to me because it seems interchangeable and there are so many nuances. I found what to me is a pretty good explanation of Apraxia and how that condition might or might not relate to BEB. Here is the link: http://www.blepharospasm.org/apraxia-a.html |
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Posted by: tatia ® 01/02/2014, 18:13:46 |
I was once diagnosed with ALO because I had periods of eyelid closure that wasn't associated with spasms and wasn't relieved by Botox. When my neurologist asked if I was experiencing any weakness, I had insisted I did not feel weak at all. My eyelids were just drifting closed. If I rest my eyes for a little while, I can often open my eyes, but they drift right back closed within seconds. As time went on, I got worse, and it became obvious that my eyelids have times of excessive weakness. So my correct diagnosis is ptosis, not apraxia (ALO). I do also experience blepharospasm at other times. Ptosis is not generally recognized by the experts as part of blepharospasm, except as a side effect of Botox. Mine is not a side effect of Botox. Sometimes I wonder if my eyelid muscles are getting injured during times of weakness and then they have cramping later on. Weakness can also cause dry eye, which can in turn precipitate blinking. You may very well have ALO, but since it took me *years* to figure out that ptosis is another possible alternative when the eyes just drift shut and can't stay open, I just wanted to add this information to the discussion.
p.s. my blepharospasm improved slightly when I stopped getting Botox after 10 years of injections being misdiagnosed with BEB/apraxia Modified by tatia at Thu, Jan 02, 2014, 18:14:21 |
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Posted by: In Wisconsin ® 01/03/2014, 10:08:47 |
Tatia, I am just curious if the diagnosis of ocular myesthenia gravis was ever considered for you given or if you ever had a trial of pyridostigmine for your ptosis. Attached is a journal report on "Presentation of Myasthenia Gravis Mimicking Blepharospasm". They report on 2 patients with blepharospasm combined with ptosis, both of whom got worse with botox, but responded to treatment with pyridostigmine - including resolution of the blepharospasm as well as the ptosis.
Jill Related link: http://www.neurology.org/content/58/1/150.2.extract |
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Posted by: tatia ® 01/05/2014, 08:37:26 |
Hi Jill, Thank you so much for your suggestion, it was very appropriate. I have been tested for MG, and I have followed a great MG forum for a few years as part of my search for diagnosis. Although I have self-administered a positive ice pack test, I am negative for AChR binding antibodies, AChR blocking antibodies, AChR modulating antibodies, and MUSK antibodies. I’ve had 3 normal EMG’s. Many patients on the myasthenia gravis forum had normal EMGs and weren’t diagnosed until they had the SFEMG, which I have not had, but I did have a trial of Mestinon to which I did not respond. My weakness comes in “attacks” or “episodes,” and is not necessarily “fatiguable” like MG. (But we have already explored the periodic paralysis diagnosis to no avail.) Over the last 13 years, I have seen 2 general neurologists, 6 movement disorder specialists, and 4 neuromuscular specialists. They are all flummoxed. I feel a little bit guilty asking you this, but I’m getting desperate. If I described my symptoms to you in detail, would you be willing to keep me in the back of your mind, in case during the course of your blepharospasm reading/research you come across anything else that might be helpful in my case? No pressure intended, and no offense if your answer is no. If your answer is yes, you could either email me, or start a new thread so we don't get too far off topic for this one. Tatia |
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Posted by: j_norton ® 01/03/2014, 13:46:24 |
Tatia, how can I distinguish ptosis from BEB?
The reason I accepted my bleph diagnosis is that I completely identified with the “tricks” listed on this site that we do to get relief. Yawning opens my eyes, vocalizing such as talking, singing or even humming, and eating (chewing gum does not help). On the other hand, reading, watching TV/movie, walking and driving makes it difficult to keep the eyes open. Does ptosis respond to any of these behaviors in this way or are these behaviors sufficient to exclude ptosis? |
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Posted by: tatia ® 01/05/2014, 08:26:48 |
I do not have the expertise to truly answer your question. This is getting into diagnostic territory. I can tell you that I do have *both* blepharospasm *and* ptosis. Sometimes people have both blepharospasm and ALO. I think you're correct in the fact that the tricks work for you certainly supports your doctor's bleph diagnosis. I also believe the conclusion that "blinking is BEB, and closing is ALO" is not entirely correct. BEB can be squinting or closing, without blinking. In general terms: BEB is when the eye closing muscles are overactive. ALO is a problem of brain signalling in the eye opening muscles. Ptosis is a lack of strength in the eye opening muscles. I do not have the training or expertise to know how these are distinguished from one another in diagnosis. Others have mentioned the pretarsal injections. It would be wise to try different injection patterns and possibly other doctors injecting, before deciding that Botox doesn't work for you. Here's a link to a video of ALO: http://www.doctorshangout.com/forum/topics/karuturi-rounds-56-unable-to-open-her-eyelids-at-will?commentId=2002836%3AComment%3A496851 Some kinds of ptosis improve when the muscles are chilled; sometime when your eyes want to drift closed and it's more comfortable just to leave them closed, you might apply an ice pack for a couple minutes and then try to open the eye again. Is it easier to open the eyelid? Does it open wider than before? One site I saw says even a difference of a couple millimeters is a positive result. When both eyes are affected, one can apply an ice pack to one eyelid only and then compare the two eyelids. A negative result doesn't exclude ptosis, and a positive result doesn't necessarily confirm it; but a positive result would be worth discussing with a doctor. In the case of eyelid myotonia, the ice might make the eyelids much worse. Modified by tatia at Sun, Jan 05, 2014, 13:30:37 |
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Posted by: afisher ® 01/03/2014, 13:51:30 |
This is also my experience. Eyes drift shut and I can't hold them open. I've had mixed opinions from the various doctors I have seen. One Opthalmologist did diagnose me with ALO, but all Neurologists have said BEB. I did not get relief from Botox until I began having the eyelid injections that Peter mentions. I think initially there was some information on this sight from the Botox Centre in London that I brought to my doctor and since then I have been getting these very painful injections. I did not think Botox was working for me until as time went on (and I continued treatment every 12-13 weeks) I could tell it was working only because of how much worse it became at the end. I now get injections every 10 weeks. I am able to function with the injections versus being almost totally non-functional when they wear off. The other day I was even able to keep them open while driving - a very rare occasion. Even though it did take effort. Andrea |
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Posted by: JBHASLAM ® 01/08/2014, 06:54:51 |
I was like that and had Botox/Dysport injections at National Hospital for Neurology for 18 months with little joy. I was injected by another doctor at another hospital. and my eyes opened and stayed open till today, 2 years later.(They shut at night time obviously) It can depend very much on the person doing the injections and the sites chosen. I was 'blind' before and can't begin to explain how it feels to see again. I have other problems but I cope with those! |
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Posted by: j_norton ® 01/08/2014, 14:20:43 |
Thanks for posting about your experience. It gives me hope.
It sounds like we need to cycle through doctors for about 1-2 years each until, if we are luck, we hit the jackpot. What a craps shoot. |
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Posted by: VesaFinland ® 01/11/2014, 02:33:11 |
Thank you for your post. I was just about losing my hope but your post gives me new energy. I've had Xeomin / Botox injections since beginning of 2012 from the same neurologist every 3rd month with a little help only. Last two times ( September 2013 and last Wednesday) practically with no help. I am convinced that I have more apraxia than BEB and she agrees. She also tried injection to pretarsal area from my suggestion with a bad result. Now she decided to dispatch me to the best Blepharospasm expert in Finland she knows to let him give me the injections. Maybe this turns things better. Thank you! |
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Posted by: felini ® 01/29/2014, 07:27:03 |
Nil Desperandum.
Injections yesterday. Seem to have got the dose and period about right now. Having Apraxia I have double the usual dose 2 units per shot in the upper and lower lids plus 1 unit adjacent to the outer corner of each eye. 9units in all for each side. The units are referred to mouse units by my injector. I do not know how that would translate to America as I am in UK. Remember we are all different and what works for one may not work for another. A gentlemen from our group over here has had what appears to be a Blepharoplasty and he is a new man. Quite why we cannot work out but good for him. Hang in there. Remember it will not kill you. As Olympic and World champion Wheelchair racer Tanny Gray-Thompson says 'Do not dwell on the past make the best of what you are left with'. Regards Howard |
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Posted by: felini ® 01/16/2014, 08:32:06 |
I was diagnosed with Apraxia of Lid Opening just over four years ago. I tried all the usual coping strategies without any real success. I even resorted to micropore to tape my lids open as the problem progressed. Eventually I became functionally blind. My final coping strategy to try was Lundie Loops. These are a type of Ptosis Prop invented by a British man for himself originally to enable him to pursue his hobby of photography. He in fact had Myasthenia Gravis which is a weakening of muscles causing the lids to droop. I had the Loops fitted to my spectacles (must be plastic frames) and hey presto. In short I have been using them for nearly four years without any real problems. I have retained my driving licence and my Specialist is happy to support me in my annual renewal. My eyes have become sensitive to light and I do use tint which helps enormously as well as helps to hide the Loops. Not FL41s I might add. I tried these on two occasions and each time was given a different tint. The true FL41 I believe is more pinkish which I could not cope with. My current tint is more red/orange/brown if that makes sense. It was incidentally made for me by an optician in Cyprus whilst I was on holiday. Amazingly he was also well acquainted with BEB having used a study as part of his Phd in England. |
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Posted by: boogie56 ® 01/30/2014, 02:14:34 |
Hi there,
I live in the UK and have had blepharospasm/miege for 4 years. Nine months ago I developed Apraxia.I've been having Botox injections with an Opthalmologist and a Botox nurse at the same hospital for 2.5 years with poor results. I am now seeing an Occuplastics Opthalmologist and he believes that a blepharoplasty might help me. The specialist previously mentioned has also tried Botox injections but there has been little success. He said that side-effects from the injections are the cause of the poor results. The specialist wants to see me a couple more times to decide how much muscle he would need to remove. I'm having doubts about surgery. I wonder if maybe I should try a different injector? Any advice or comments of your own experiences would be greatly appreciated. Many thanks Boogie |
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Posted by: felini ® 01/30/2014, 09:19:09 |
Hi,
This is what is puzzling us. A Blepharoplasty as I understand it does not involve the removal of muscle, merely 'excess' skin above the eye. A Myectomy is where the muscle removal takes place. Have a look on the web for Mr Leatherbarrow in Manchester. The videos there are enough to put you right off. One of our group has had a Myectomy. My own discussions with my injector/Ophthalmologist/surgeon says results are mixed. As I said before we are all different. At present I am happy to continue with my current regime. Regards |
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Posted by: boogie56 ® 02/05/2014, 05:55:18 |
Thanks for your feedback Howard,as you pointed out the removal of muscle isn't usually carried out during a Blepharoplasty I need to talk to the surgeon again before the op.
Its good that your injections are working for you also that you are still able to drive with the help of Lundy Loops, do they make your eyes dryer than normal? I don't know much about them. Can I ask you for the name & whereabouts of your Opthalmologist/injector please, I travel to Oxford for treatment at the moment, but think its time to try another injector before contemplating surgery. This website is such an amazing source of information, advice & support its good to know that there are other people out there, with similar problems & like yourself have a very positive outlook. Regards Jeana |
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