Adie's pupil

i have adies pupil in my left eye and had this for 6 years, my optician of the time did not give it a name or give me any reasurance and i was left for a couple of years with some concerns over this condition and due to not having a name was unable to do any research of my own, I later changed opticians and my present one has done some intensive research into this and was able to explain it and set my mind at rest. My eyes are brown/green and i am 45yr old female.

Hello,

Last November 2009 I got the flu. 5 days later my right eye starts to hurt, I look and the pupil is enlarged. The next day a bright reflection shines in that eye and there is a sharp pain. The next day, I'm at the opthamologists office getting scared to death that the drops he's about to put in my eyes WON'T work. (The drops were the test he used to get my Adies pupil to react.) Thankfully it did, so there was no emergency trip to the neurologist the doctor was threatening.

Since then there have been many trips back to try special contacts, to get special prescriptions for my glasses, to deal with the double vision while reading.

The end result:
special colored contacts - NO I have to wear reading glasses with them anyway because of the double vision;
prescription glasses with no line bi-focals - YES of course this isn't a problem since I've worn glasses all my life anyway. The bifocals help tremendously.;
dull aches in my adies eye - YES often;
sharp pains - YES occasionally;
light sensitivity - DEFINATELY;
comments from others - YES but only the observant ones, I tell them it's permenant nerve damage in my eye (or like my twin sister likes to call it, "my crack eye" - she says I look like I'm on crack, not that she has every been around anyone that has been on crack, by the way).

I'm thankful for finding this site, I don't feel so much like a freak.

My suggestion to everyone out there is to get a good opthamologist who will work with you to get you the right prescription. By the way, if you have health insurance they should cover your optometry exams for life as a neurolocial medical condition.

Hello, I just got diagnosed with "Adies pupil" I am extremely frustrated with this condition; or maybe its the lack of information on it. I will say I am not the "Debbie Downer type" I'm 25 extremely active with my 2 favorite sports almost taken away from me (figure skating + snowboarding)Also was an artist in my spare time and that doesn't work anymore either.My depth perception is totally out. I am sorry if I start ranting but I am truly frustrated.
I was sent to a specialist. Once I finally got in to that doctor he treated me more like a nuisance then anything; word for word he said "people with this condition just get used to it" there were no answers to my questions :( I have migraines more often then not. I have been making myself read even through the headaches, because I enjoy it (reading that is) When I stumbled across this website I was excited to know I am not alone. But all I can think of now is How can we get the answers we deserve??? It seems because its not "life threatening" that there hasn't been enough research. Is there a way that this website with these writings can make a difference? I do believe in there being a reason for everything, so I am trying to find mine. I would love to be able to help make a difference for someone else.
So far only 2 strangers have noticed it. I do have a lot of people look at me as if they can't figure out what is out of the ordinary with me. All I know for sure is 3 job paths that I would have enjoyed to follow through with have come to a halt. That creates quite a lost feeling that's for sure.
I am very thankful for everyone's courage to speak out and if anyone has helpful advice I would love to hear it. I will keep trying to find more answers as I go. I am also going to try to find an acupuncturist and natural path in my area and see if that is the way for me.
Again sorry for the rant but I am sure all of us unique people have felt like this at one point.

Thanks for listening,
Angie

Hi Maureen here again

I posted my comments on 26/4/09 - this condition clearly affects a number of people worldwide. William Adie was born in Geelong, Australia, on 31 October 1886! Are there any eye specialists, or neurologists, out there interested in researching our condition in the context of the 21st century!! Do we need to set up some support groups? - I live in Scotland if any wants to meet up.

Maureen

p.s. I am a bit of a technophobe and do not quite understand how this site works - can anyone explain.

I went to the opticians roughly 18 months ago as I my vision is occasionally blurry when I read. At the opticians I was told that my left pupil is bigger then my right but my vision is fine.
I made a appointment with my doctor who told me "don't worry".
I changed doctors surgerys and brought it up with my new doctor as I was still completely in the dark as to why my pupils are different sizes and I have blurry vision while reading. She refered me to a specalist who I saw yesterday.
I had a eye test before I saw the specalist and was informed that I have 20:20 vision as I could read to the bottom row of letters with both eyes.
At the end of the appointment I was told I had Adie's syndrome and that this was common.
Again I have not really been told anything and have had to do research myself, which tells me that this is not common so I am not sure why I have been told it is.
I dont think any one is really listening to the fact that I am having blurred vision while I am reading because that I have 20:20 vision.
Does any one actually know anything about this and is it common to have perfectly healthy eyes that are blurry when reading?
I also have blue/green eyes.

My 5 year old little girl was just diagnosed with Adie's Syndrome. Most of the cases I have read about involve females older then 18. My daughter presented with her left pupil greatly larger than the other loss of reflexes in her legs, and a very pronounced sensitivity to light( i thought was due to her very light blue eyes). Any information would be greatly appreciated.

I am 48 year old female with brown eyes and was diagnosed with adie pupil in my left eye a year ago. This was noticed by my optician and after seeing a specialist he diagnosed adie pupil. My pupil is small, which is unusual, and has very slow reaction. It is worse coming out of sunlight into a dark room. the eye often aches and I do get a stabbing pain in the left side of my head sometimes. The specialist said that there was nothing to suggest anything sinister so I have never had any scans.

Hello - I`m a 63 years woman - who was diagnosed when I was 22 years old with adies
pupil and as well the lack of the deep reflexes in my body, recentley I have been to the hospital a lot of times - for treatment og my high blood presure and ekg - now my GP - has founds out, that cardio vascular variations also can be a a sympton in the
Holmes _ Adie`syndrom - so I am going to a neurologist to have everything examined -
if there a some other symptoms relatid to this condition - over the years I don`t think a lot about -how the pupil works - but I recognize the things you refer to.

Hoping this way to find fellow patients - it`s a little difficult to find other patients with this condition in Denmark

Hi there everyone.. I am awaiting confirmation that I have Holmes- Adies Syndrome. I am a 30 year old woman and in pretty good health.. my left pupil became rather enlarged a few weeks ago and I went to see my local optician, who was very excited at seeing this.. had all his text books out and had his colleagues in to look at me the freak or so it felt.. I am awaiting the hospital referal at the moment to get everything confirmed. My optician however told me that he thinks my pupil may return to its original size.. but from reading everyones experiences this may not be the case. This has been great for me to read your experiences as until recently I had never heard of HAS. Thank you all .

I'm female with blue eyes left adies pupil, I've lived with this for 14 years now, first identified when i was 24, i was never given a name for it, was checked for brain tumour, diabetes and was told sorry nothing we can do for you so was never given drops or anything.

I was very self conscious wouldnt go out in daylight, keep eye contact with anyone, very insecure about my looks due to peopel saying "urgh whats wrong with your eye your freaking me out" i am freaked out by it also but can't do much about it.

I did find a lovely female optician who offered me blockers, these block out the natural colour of your eye completely so the adies isnt as noticeable, ( hand made phrosthetic lens made by hospitals) i did find it awkward to get a natural looking blue colour so opted for asian brown, which i have worn now for 12 years, and because they block they only allow so much light in so i dont get headaches or eye pain when i wear them.
They are about as expensive as other normal lenses that last a year but are made to measure, most people arent aware i'm wearing contacts and would never know i have a problem pupil which has given me a better lease of life.

I have noticed that as time goes on my adies isnt as dilated as it used to be (maybe because of age) and is now "sometimish" i can have a few hours where both pupils are the same size in bright light, and then it will go off again, playing games with me.

I have found over the years i havent been very confident with intimate relationships because of this condition, and wonder if it affects other sufferers the same, and has anyone else opted to completely change their eyes to mask the condition??