Adie's pupil

A physician noticed my pupils during a routine exam when I was 21 - I'm now 54, female, with hazel eyes. After EEG and brain x-rays, the diagnosis was bilateral tonic pupils - and what I was told only last year was HAS. I went from normal vision to trifocals between 30 and 40 and have developed some auto-immune problems (asthma, psoriatic arthritis, chronic diarrhea).

My eyes ache and blur much more quickly after reading or computer work, but rest and lubricating eye drops help. My reflexes are depressed, but that was actually a ittle bit comforting - finally a reason that I was clumsy and not the athlete I wanted to be. Recently I've experienced tingling and numbing, especially in my hands and feet.

Fortunately, the condition has been annoying rather than debilitating, although I find it worsens the older I get. I live in the southern US, which doesn't seem as proactive about diagnosing HAS - as long as you have no brain tumor, doctors aren't concerned. Learning about Holme Aides Syndrome has strangely been a relief - having a reason for so many multiple symptoms. This site has also been a great resource.

I had an ectopic pregnancy in 1991. They removed the pregnancy (not the tube) and treated me with a drug called metatrexate. It is a chemo drug. Shortly after treatment started, I developed a monster cold/virus. I was absolutely miserable for at least 7 weeks. I had completed three cycles of the metatrexate. Naturally, my obgyn was oblivious to what was going on with me from the neck up. My symptoms were a draining (constant) from the left eye, excessive sweating on my face and under one arm. I went to 9 doctors in 10 months trying to get relief. It was horrible.

My last resort was someone who sent me to a doctor who was more like a faith healer. Plus, since this began with the miscarriage, doctors treated me like a head case. The crazy lady diagnosis. Finally, I had dental problems later in the year and visited my dentist. He noticed a bubble on my gum and suspected I had an absessed tooth. I told him my whole story and he suspected nerve damage, but wanted me to visit a neuologist (which I did). No cure, but it has improved over the years. One thing that I'm curious about is "deep tendon reflexes". What exactly is this? And how does it present itself?

Hi, I am a 40 yr old female with blue/grey eyes. I noticed one night last week that my right pupil seemed to be fixed and dilated. I was worried that it might be a serious neurologic problem and went to the hospital. They ran blood tests and a ct scan but all was clear. I did notice that my right knee showed no reflex when the ER doctor checked. They then sent me to the opthamologist on call. The assistant did a bunch of exams and then the resident did the same tests, followed by the doctor doing the same tests. The resident and the doctor discussed it being adies (I thought they were saying 80's). They then administered the pilocarpine drops to shrink the pupil. It worked so I asked what I should do if it happens again. That's when he said it was permanent, not to worry and to go home. He didn't even bother to tell me what the syndrome was called and seemed to think this was no big deal.....just a learning experience for the resident who was thrilled to see this for the first time. I had to use the internet to find out what this was all about. I don't really know what all of my symptoms might include as it has only been 4 days. I am already extremely light sensitve, have frequent headaches and already wear glasses. I really hate looking in the mirror and looking like a freak. I'm really glad to have found this site and to know that there are a lot of us out there.....not enough to get research I'm sure, but it is good not to be alone. Thanks to everyone else who has shared their experiences.

I didn't realise there were so many others out there! I am a 38year old female who had one eye disagnosed at 15 and the other at 20. I remember having loads of doctors wanting to come and have a look at the time and even more when the second eye was diagnosed as this is meant to be even more rare. Basically I was told it could be a chemical thing, was more common in nurses and as it didn't effect my eyesight not to worry about it and wear sunglasses when out in bright light. I returned from 6 months in Afghanistan 18months ago and started getting constant headaches and now my eyes vary in size all the way to pinpointing on me. I have a CT scan booked for next week so hopefully nothing sinister but no one has even mentioned Adies being a possible factor now.

PS I used to have brown eyes but they have been green for the last 20 years!

I am a 78 year old female with bluegrey eyes. I was diagnosed when I was 30, causing the same excitement, as mentioned by another writer above, in a group of students at an eye hospital. My left pupil had become very large. One student put me in a darkened room for a while, tapped my knees and ankles and announced to his colleagues "she's an Adies!". I gather we are quite rare. My GP father had discovered that I had no knee reflexes when I was about 8, he was very puzzled.

Now that I am elderly I seem to notice the inconvenient effects more. On sunny days I am dazzled by the sun more than I have been used to. In fact I have had blinds installed for my kitchen windows and make sure I have good sunspectacles for when I am out. I always carry a torch when I go out in the dark as I obviously don't get used to total darkness as quickly as other people.

It was interesting reading the other e-mails here, good knowing that there are other odd folks out there!

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.