Hi all! I've been reading the site for awhile now and thought I
might share a recent experience. I was diagnosed with Adie's about a
year and a half ago now. I have always had sluggish reflexes,
migraines, and there was even some talk of temporal lobe epilepsy at
one point (which was never proven). Then I woke one morning with my
right pupil not reactive and feeling quite woozy. Upon testing, my
reflexes were gone as well.

The neuro-opthamologist who diagnosed me knew very little about
Adie's and wasn't quite sure what to tell me. He did mention that
there were medications and drops to be tried, but sunglasses were the
best solution. So, I started wearing the glasses and the wooziness
improved. I've found that I have incredible night vision, with some
depth perception problems. I have been getting headaches throughout
and pain in my eyes. I would get sudden attacks of wooziness,
headache, eye pain and distorted sight, which I would have to just
sleep off.

Last month I got one of these attacks and it wouldn't go away, so saw
one of my dr's colleagues that I had never met (my doctor was out of
town). He had one other patient with Adies in his 50 year career, and
had done research on the subject. He was concerned that I seemed to
have lost some of my sight in the last 8 months. He consulted with a
neuro-opthamologist, who commented that it was just Adie's and I
should take some advil (does anyone else just want to drop kick some
doctors?). The doctor I was seeing had some other ideas, though, and
these are what I wanted to share.

His first comment was that he felt that Adie's Tonic is caused by
migraines that are left untreated. As a child, I had migraines that
did not hurt and he felt that I probably still do, but have just
learned to ignore them. He gave some recommendations on how to treat
that and sent me directly to an optometrist that he knew was familiar
with Adie's.

This fellow prescribed glasses to correct my sight, some of which I
had lost (we have no idea why) which are also tinted and treated to
protect my eyes. These are very similar, apparently, to glasses worn
by people with Irlen's Syndrome, and it has made all the difference.
I can wear lighter glasses, with a sunglass attachment for outside.
My sight, obviously, has improved, and my perception of colour and
shadow is greatly improved. I really recommend trying this course of
treatment. I'm not sure exactly what they did to the lenses, but they
are a "rose/magenta" tint with a bunch of adjustments and had to be
special ordered in (I do live in a large urban area, so this was
unusual).

For myself, I don't feel that the drops or medications are a healthy
way to treat this disorder, and I don't agree with doctors
prescribing these when they are not experienced with the disorder.
I've found that the advil migraine formual works for my headaches, if
I take it as soon as one is coming on. I also keep the lighting in my
home dim and don't watch tv or work on a computer often in the
evenings. I do work on a computer in a fluorescent lit office all day
quite successfully. Since getting the new glasses, I have been
enjoying sailing and other outdoor activities more, something that I
really couldn't do last summer, because of the glare and sunshine. I
wear hats when it gets really sunny out. I also find the meditation
helps (probably because I'm resting).

I hope some of this information helps someone out there. I did get
all the doom and gloom stories when I was first diagnosed, I am
losing sight for some reason, I often still have eye discomfort (and
probably always will) and my balance is definitely not what it used
to be, but I'm optimistic. My son has Asperger's Syndrome (an
autistic disorder) and I take my lead from him. He is the bravest,
strongest person I know and my discomfort seems small in comparison.
Hang in there gang! If we keep educating the doctors out there, there
are bound to better treatments coming along.