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TOPIC: Apraxia of the eyelids

Apraxia of the eyelids 1 year 5 months ago #4000

  • Bookworm 62
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I've had Blepharospasm for about 3.5 years and over the course of this year I have had increasing problems with apraxia. That is to say, if I am focusing on something hard for a time when I close my eyes to blink I cannot open them again for several seconds. This delay in my being able to open my eyes tends to range from 3-5 seconds (sometime longer). The doctor at my last Botox appointment said this was part of the condition but it has only become a problem for me fairly recently. Have other people had a similar experience?
BW,
Janine P.
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Apraxia of the eyelids 1 year 3 months ago #4056

  • annabel
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Hello Bookworm 62
I have had apraxia of the eyelids which was treated by botulinum toxin injections along the edge of the eyelid. This improved things. It was diagnosed around ten years ago now.
The apraxia seems now to have gone away, because I started getting symptoms which showed I was having too much botulinum, so my doses are now very much reduced. I had an almost 6 month gap between injections, and I have blepharospasm, but no apraxia now.
Dystonia symptoms do seem to keep changing, so you may find that the apraxine settles down on its own. If not, perhaps you could ask your doctor about pre-tarsal injections which is the name of this injection site.
Best wishes
Annable
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Apraxia of the eyelids 1 year 3 months ago #4057

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Hi Annabelle,
Thanks for your response which was interesting. My Botox dose was increased about 18 months - 2 years ago but there have been times when I have wondered if the apraxia problem has been a result of the build up of botox. I am interested to know what symptoms you displayed that led your clinicians to suspect you were having too much botox?

After three years of treatment I have stable periods mid-treatment cycle but also lots of ups and downs in between, It still all seems a bit hit and miss with regard to treatment, despite my being treated in a specialist clinic at a well-known London eye hospital!

Best wishes. Janine (aka Bookworm 62) X
BW,
Janine P.
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Apraxia of the eyelids 1 year 3 months ago #4059

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Hello J
For about 3 or 4 appointments I had problems, about a week after injections, with very droopy eyelids (particularly on one side). My eyelids felt really heavy. As well as this I continued to have blepharospasm when I was walking, reading etc. Eventually I took a photograph of myself and took this in to the clinic. I think this was what decided my doctor that I needed a break, and he told me he wouldn't treat me that day but would see me just as soon as I felt I needed to. I decided myself to wait for as long as I could, and that turned out to be almost another three months after that appointment. It seemed to me that it would be easier for him to work out what to do if all the botox had worn off.
The two small injections I was given when I did return haven't really improved things much, and although I am fine walking around indoors, when I am outdoors walking, the walking acts as a trigger to the spasms and I walk along rather erratically it feels. I also have difficulty reading as I have spasms after the first very few minutes. However, when I am engaged in conversation, or with something, there is no sign of anything being wrong. That is good, but makes people wonder what on earth I am struggling with.
I attend a London neurology clinic, having had problems even getting a diagnosis at my local hospital. It took a while to get the botox dose right, but I a few years back I went through a very stable period as a result of the injections. I have been to lots of Sessions organised by the Dystonia Society where I have heard many Specialists speak. Dystonia is a challenge to the professionals, and sometimes we are lucky and the treatment is wonderful and controlling, and other times things just don't seem to quite work. It seems to me that either we allow the symptoms to do what they will, or we take advantage of an up and down cycle provided by botox treatment. It can make life difficult, but I'd rather have just a couple of good weeks every three months than none at all.
I hope you have someone around you who can see what you are dealing with and understands the frustrations. I am very lucky that I have.
Best wishes
"Annabel"
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