Greetings to All:
I'm a new member, a U.S. Naval Officer currently living in Naples,
Italy. I was diagonosed with Adie's Pupil in September 2002 at the
Bethesda Naval Hospital in Washington, D.C. (The President's
hostipal.) It is also the location of the National Eye Institute.
They were unable to provide me much help. In fact, I was told that
there is no ongoing research underway relative to Adie's Pupil.
Outlined below are bullets that sum up my "spin" on this ailment:
* I believe there are lots of different reasons for getting Adie's
Pupil, a virus, genetic, a dental connection, migraines, etc. In my
case, I believe the cause could have been a virus (herpes zoster, I
had chicken pox in the past), genetic (mother and brother have had
small cases of 'bells palsey', a related condition), I had just had
lots of dental work done and my mother has a history of migraines.
Best bet, in my case: virus and/or dental work. (The medical
community likes to declare "a virus" when they don't have a clue.)
* I believe a "cure" is possible, but, the medical profession is
effectively, ignoring us; there are not enough of us and there is no
money (the all-mighty dollar) to me made. The human body is
incredible and can "cure" itself. Analogous to a broken bone, if an
Adie's eye is placed in the right environment (like the cast to help
a bone heal), there is a much better chance that the eye will heal
properly. When my pupil first dilated, it was fixed, totally non-
responsive, and my fixed pupil measured about 7 mm. It would not
move for light or for accommodation. It held this way for the first
few weeks. Today (16 months later), my dilated pupil is not as
large and the nerves to the pupil have regenerated on their own,
but, improperly. I have full accommodation (acutally, over-
accommodating) AND, some slight response to light. The reason for
this is: 1) 90-95% of the cillary ganglion nerves are for
accommodation, and 2) light impedes (tears) the repair of the light
sensitive (responding) nerves (the other 5-10% of the nerves).
Because of that it is very difficult to ever gain full light
responsiveness. IF the medical profession could figure out how to
create an environment to allow the eye to heal properly (i.e., cover
the eye, wear darkened (bandage) contact lenses that get
progressively "lightened" over time (i.e., slow reintroduction of
light), use of "steriod" and/or "growth hormone" drops, etc.), then
the return of a normal pupil is possible. To date, our eye care
professionals are doing nothing...and provide minimal to no medical
care. The "do nothing" approach does not work. I know more about
Adie's pupil than most eye care professionals and I'm an engineer.
(Kinda scary.)
* I have light blue eyes, a dilated pupil is very evident. I now
wear dark blue, colorized contacts every waking moment AND I use
diluted pilocarpine drops that I mix myself. I get a 15 ml bottle
of saline water solution from my optometrist (I get them for free),
pop off the top, and (on my own) place SEVEN DROPS of pilocarpine
(from a 1% solution bottle that I obtain by presciption) and wala,
I'm done. I place a drop in my eye every two hours, while I'm
wearing the contacts. I've had no problems to date. Of course,
when you do the mixing, you must wash you hands and keep
everything 'sterile'. I'm not about to pay ridiculous ('special
order') prices to have some pharmacy mix it, effectively using the
same procedure that I use. The 15 ml lasts about a month. This
practice may work for others, but the concentration you use will
probably vary. Everyone is different. I had to 'practice' several
times before I got the concentration that worked for me. (By the
way, for those thinking I'm crazy for doing this 'on my
own..it's 'unsterile'...it's unsafe...think about this...While
taking a shower, have you ever gotten tap water in your eyes? Ever
opened your eyes while swimming underwater? How sterile is that?
Just be careful, sterile and use common sense.)
* I have lost NONE of my reflexes, including the knee reflex. And,
I have not noticed an increase in my sweating and I never get
headaches. I am very light sensitive and my eyes now water often.
(Any way to mitigate watering eyes?)
* I do notice an improvement on how my pupil appears/reacts as the
day progresses; bad in the morning, great by late afternoon and
early evening.
Sorry for the long e-mail; lots to share. FYI, I'm also going to
stop letting eye care professionals tell me "it's no big
deal"...it's "only cosmetic"..."it's benign"..."you'll learn to live
with it"..."it could be worse"..., etc. That's all BS. It is a BIG
DEAL. It does effect our vision (blurry and light sensitive), gives
many others headaches and misc 'aches and pains' and it is a cancer
of the worse kind, cancerous to your soul...your self-image and self-
confidence. Let's not let them make up excuses for their inability
to properly care for those with Adie's pupil.
That's my spin. I hope it helped/enlightened some; I did not intend
to offend or upset others. (If I did, I'm sorry.) I do have
hope...and, will never lose it. Don't ever lose hope.
Take care and God bless... Paul