Hi,

I'm also new here.
My problems started about nine years ago. My right eye's pupil is
dilated completely and doesn't react to light anymore. My
opthalmologist could not establish the cause. It might have been some
virus like the flu, he said.
Like many others there's an absence of knee and ankle reflexes, but
that doesn't bother me.
Since my pupil got dilated, I've been looking for means to block the
incoming light. At first my opthalmologist came up with 0.125 (1/8%)
pilocarpine, but even with this low concentration I experienced a lot
of pain in my eye. Later on we experimented with 0.0625 (1/16%) and
I'm using it ever since. Because an excess of light blinds me, I'm
using it several times a day, more frequently during summers. It takes
about 15 minutes for the drops to work and it lasts for 1.5 to 2
hours. Of course I also wear sunglasses for extra protection.
Although the drops give me relief from the excess of light, sometimes
it can be annoying to administer the drops, e.g. during work. Because
the color of my eyes is light blue, it's always easy to spot the
difference in pupil size between the two eyes. Even after many years,
I sometimes find it difficult when people notice the difference, but
maybe that's only in the eye of the beholder, i.e. the holder of the
eye...
My opthalmologist told me about Adie's Syndrome when I first visited
him (he had to look it up first though) and guaranteed me that all
other possibilities had been ruled out and that probably this
condition would stay the rest of my life. I also tried a big (soft)
contact-lens for a while with a small pupil size (to block the light)
which was specially made for me in my own eye color. This lens really
freaked me out, usually it sank out of the middle of my eye and didn't
look realistic.
The only futher thing my opthalmologist could do for me, was
prescribing these pilocarpine drops. After several years now, I was
wondering whether I should see an opthalmologist again (moved to
Amsterdam recently so I could see another) I once had a second opinion
but this came up with the same conclusions. Does anyone have some
advice/experience on seeing different doctors or on new insights on
Adie's Syndrome or ways of dealing with excess of light?

Regards Pieter (29)
The Netherlands


--- In adie_syndrome@yahoogroups.com, "ally_456789" <ally585@...> wrote:
>
> Hi I'm a 21 year old female and have just been diagnosed with Adie's
> in my right eye. It's really nice to read messages from people
> experiencing the same problems/discomforts. I have a question about
> pilocarpine. My neuro-opthalmologist prescribed 0.25% pilocarpine
> which I used yesterday. I was in a lot of pain; it felt like my
> eyeball was going to pop out of my head! This and my vision was
> blurry, I got a migraine and my pupil shrunk to the size of a pin.
> Has anyone else experienced this? The pharmacist said that it was
> strange because of the very low dosage. Does anyone use a lower dose
> than this?
> Any comments or responses would be very much appreciated.
>