Too bad I didn't get one when they were acting weird!
Pleased to meet me?
About 13 years ago I walked into the Neurologist’s office and he got up, walked across the room, shook my hand and seemed genuinely excited to meet me. At this time I was rather confused, excited me meet me? A Mom? What on earth could he be excited about? He said “I only get 1 of you about every 5 years”. Ok, now I am totally confused, “What a blond?” Then he said “You have ‘Adies‘, do you know what that means?” I thought for about ½ a second and said “I survived the 80’s?” of course he laughed.
He began to explain to me that I have a rare condition with a really huge name which he broke down to ‘Adies Tonic Pupil’. Ok, what exactly is that? I must have had a look of horror on my face because the first thing he did was to inform me that “It won’t kill you”, well that’s a good thing right? Essentially it is a condition that is related to the nervous system, it was first discovered in 1931 by Dr. Adies.
In looking up information for this Hub, there really seems to be conflicting sides to the story. There is no clear reason as to why or how it happens, some say it is a virus, I did find one Doctor site that said it could have been injury. Yet no one seems to say it is genetic, which my original Dr. did say. My Grandpa could have had it, but his eyes were so dark it’s hard to say. He did get the ‘shakes‘ like I have, but because he was a big drinker it could have been the after effects of alcohol. My youngest daughter seems to be suffering from a few of my symptoms. The consensus is that it generally happens to women between the ages of 30 and 40, mine happened much earlier.
I will take you back a LOT of years to when I first noticed something was wrong.
In 1986 I was getting some clothes out of the dresser for my sons, my eyes ‘felt’ odd and the color of what I was viewing seemed a bit ‘off’. I didn’t have the light on, yet it was day time and fairly overcast, so it wasn’t bright in the room. I closed one eye, then another and the difference was quite noticeable, my area of ‘gray’ seemed darker in one eye rather than the other. I quickly looked in the mirror and noticed one pupil larger than the other. How odd was that? I didn’t think much of it and let it go.
Over the years I would begin to feel my eyes change from time to time, my vision would become distorted. I’d quickly run to the mirror to see what was going on. It was amusing to see the pupil of one eye larger than the other and from time to time I’d get a really cool ‘fish eye’ thing going on. My pupils would try to dilate (Open up) and it would get stuck on one side and work on the other so I had an oblong looking pupil. That was my ’fish eye’. I’m sure it had to be strange for those having direct conversation with me to keep a straight face. I did have one person look me in the eye and say “Ummm, What’s going on with your eye?” Since I had felt it happening I knew what they were looking at and could tell them, my pupils do this really cool thing. That was about all I knew at the time.
I'm a Rock Star!
I did go to an Optometrist and since he didn’t know what was going, on he sent me to an Opthamologist. This one put some drops in my eyes to ’straighten them out’, he figured if he could just get them both the same size all would be good. I left the office wearing those really cool, huge, super dark sunglasses. Just call me a ‘rock star’. As soon as the medicine wore off, they were back to one big and one little pupil.
When I went to the regular Dr. they would beat on my legs and different areas trying to get a nerve reflex. I hadn’t had one of those in years, and told them this. After bruising me (no not really) they’d just give up trying to get a reaction.
The problem with walking around with one pupil big and one small, is seeing. It presents a challenge. If the day is bright and sunny, do you wear sunglasses? You only need them in one eye. It wasn’t much of a problem seeing in the dark at that time, I still had one good eye. Things were just shaded differently.
After a while I noticed both eyes going from big to little, always at different times, never the same time. My pretty blues eyes now became something of an oddity, rather than look at the color people, were looking at the center.
Shaking like Don Knotts
Things were beginning to get a little blurry for me, I couldn’t focus as well. I also noticed the shaking of my hands seemed to be getting worse. Over the years, when giving hair cuts to my family, they would take bets to see who was going to lose an ear. When taking new jobs, the shaking of my hands were noticeably worse at first. I just figured I was more nervous than others. Try to put a screw in a hole while having someone watch you when your nervous, then compound it with having issues with your nervous system. Of course at the time I didn’t know what was going on.
Handing someone a cup of coffee is out of the question! Drinking coffee can be hazardous to the front of my shirt. If I am around people I don’t know, it can be much worse. Speaking publicly can make me look like Joe Cocker, my movements all over the place. Most people get a little nervous but are able to hide it quite well, mine shows visibly. My husband said I shake like Don Knott's in 'The Ghost and Mr. Chicken'.
There is one thing that helps
As a young person age 15 to 16 yes, I did inhale… I soon found out that this particular form of entertainment was not for me. Somehow or another the active ingredient in cannabis which gives the high feeling, works differently with my nervous system. Most people have fluid movements, I did at that time as well. When I had imbibed in that activity I noticed a definite difference in my movements. Rather than being fluid they became extremely jerky. To this day I still cannot partake, even at a party. Good thing for me peer pressure doesn’t ‘get to me’.
I did notice that if I drank 1 beer, my movements would be much less shaky and I could do intricate work, such as painting trim. It seemed to calm down the reaction of the nerves ‘talking’ to each other. If I didn’t have that 1 beer, you could be guaranteed that the desired effect of my intricate work would be something to behold! Sometimes even threading a needle can be a project. Not only can I barely see the thread or the needle but the shaking movements of my hands cause some amusement with those viewing. The one thing I am very good at is target practice, this is an oddity. When aiming a shotgun or any other weapon that I am using, the idea of a ‘steady hand’ seems to escape me. Yet I manage to get dead on almost every time. I have learned to let my hands/arms do what they will and ‘time’ the circular motion. The amount of caffeine I consume does not really seem to effect my nervous system, if I start out shaky in my day it’s not going to get worse by drinking coffee.
Medic Alert? Me?
If someone decides to scare me this can be quite a sight. Normal people who get scared seem to calm down rather rapidly, I take a bit. My kids think it is funny to sneak up behind me to make me jump, so they can see my body’s reaction. Provided I am standing, only my hands and arms jerk, if I am sitting my legs and feet get in on the action. I have actually hit people, I’m not sure if it was a purposeful reaction or involuntary.
What I really need is to find a medication that dulls the nervous system. Mine seems to be on hyper drive all the time, and not in a good way. For the longest time my husband thought I may have Parkinson’s disease, except I don’t have the head shaking thing going on.
How it finally got diagnosed was my ’brain pinches’, that is the best word I can use to describe it. I began to suffer from moments when a portion of my brain felt as though it was being given a good pinch, imagine this by pinching your under arm for a few seconds. I went to the Dr., the first thing they prescribed was something for headaches, no I didn’t have headaches, and the medicine didn‘t help. There was no reason for these so they sent me to have an EEG, sleep deprived. That was fun, all that goo stuck to my hair. Apparently there was nothing discovered, so I was sent for a Cat Scan. During this I did have a head pinch, a clear spot showed up on the scan but they felt it was nothing. After this I was sent to the Neurologist, it was he who told me what I have. I still have the head pinches but they don’t feel it is associated with Adies.
He informed me that I really should wear a Medic Alert bracelet. If for some reason I should be knocked unconscious and EMT’s were called, I could miss out on proper treatment because I would appear ‘Brain Dead’. My eyes will not respond to light, neither will my other body parts respond to tests. Because of the name, and lack of knowledge of this condition, I have not gotten a bracelet. ‘Adies’ can be misconstrued with another serious disease. Until the stigma of that is gone, I will just have to inform the people that I am around that I have a nervous condition which makes those tests useless on me.
What I have now
What I have now is two eyes that will not dilate at all. My pupils are not more than this O, they never get bigger. So for me seeing at night is very difficult. Even after sleeping they do not open. In the dark the eyes dilate to allow for more light, mine do not. Recently I went to see my step-son who is an eye doctor, he used the medicine to try to dilate my eyes, so he could look inside. Because of some pretty nasty headaches I have had recently he was looking for internal damage. He did not find any. They did open slightly, but did not dilate fully. For now my pupils are permanently ‘fixed’.
Having been used to seeing things all of my life, the lack of being able to do so now bothers me. In the dark, I know things are there, but can’t see them. I’ve never been afraid of the dark, but it’s the unknown that scares me. Not being able to see even the outline of items on the floor can cause a lot of shin bruising. I use my hands to feel my way through a darkened room.
My autonomic nervous system - or deep tendon reflexes is what is affected by this, which means, I don’t have any. This is not to say I can’t react, I can, but differently than what is termed ‘normal’. When a doctor taps on my knees, they get no ‘knee jerk’ reaction. This will never change.
Wikipedia says that I should sweat more than normal, I did have Hot Flashes when I was younger. Now that Menopause has hit, I guess I’m more normal. Since all I have had to go by, is what I have experienced, I don’t see my sweating as anything abnormal. When it’s hot I sweat, when it’s not I don’t. I do know that I prefer cooler temperatures, it’s easier for me to heat up than cool off. I have always been this way, getting hot sort of makes me angry when I can’t cool off.
When testing, doing something such as taking a typing test or something that requires hand/eye coordination, I can do this but it is very difficult. When nervous, the body naturally tenses, when you have Adies and the body tenses, your muscles go haywire. They won’t necessarily do what your brain is telling it to do.
Gotta have humor
I wear glasses but they will never fully help me, my eyes are blurry most of the time, making it difficult for me to focus. For now there doesn’t seem to be any treatment for Adies Tonic Pupil, it has been something that I have learned to live with. Everything is always a little bit darker than it should be in my world of vision, because the amount of light let in is never enough. The question remains “Will I go blind?” At this time there isn’t enough information on Adies Tonic Pupil to determine that but so far, they say ‘no’, not very enthusiastically though. “Will it kill me?” The only way that I could possibly see dying from this is in my reactions. If I fail to react swiftly enough to certain things then that is quite possible. For the most part I avoid things like walking in front of a bus. Because I can’t see beyond my headlights when driving, I avoid driving at night as much as possible.
So for now I’ll just do what my husband says when he shuts off the light at night and I am stuck outside the room “Follow the sound of my voice” (It works better if you use an eerie voice when saying this)
Brendon Henshaw on December 27, 2019:
The Chiropractor I went to also specializes in treating baby's, it was best for me to go to a Chiropractor that gives gentle treatment. She worked on many places of my body, but I think that it was the neck treatment that helped my pupil's. I would quite often feel unwell after the treatments, but after a few days get better again. It was tough, sometimes I thought she was making me worse. But I hung in there and finally saw some improvement. Immediately after treatments, I drank water, then do a slow 15 minute walk. My wife would then drive me home, because the treatment would take a lot out of me
Brendon Henshaw on December 27, 2019:
For my pupils to start working. I went to a Chiropractor, she did small gentle treatments twice a week for a month. Then once a week for a month, She helped get my pupil's to move again, took six weeks after I first saw her, but they were very slow. She was the only medical person to check my eyes with a torch, to check if my pupil's reacted.
Sweetsusieg (author) from Michigan on December 26, 2019:
What did they do to get your pupils to react? You said gentle treatment but what was it? Last time I went to the eye Dr. they had to double dose me to dilate my pupils and they still barely opened. Would love to get them to react. I have cut out a lot of the items you suggested below and still no change. Good luck with your progress!!
Brendon on December 25, 2019:
Thanks so much for sharing your story, helps me to think that I'm not crazy in the head and causing me my own symptoms.
So here is some of my story:
I'm a 50 year old Kiwi Human Male
When I was young and did sport/work,my eyes would sting like their was acid in it, when I sweated. I always struggled to see outside at night, compared with others. When I started to drive, night time was especially hard on long journeys with the on-coming car head lights, after these drives I would have bad migraine and vomiting/nausea. When I was 43 I started to get photophobia at different times. I saw many Doctor's, they didn't diagnose me with anything. They referred me a Mental Hospital, who said their was nothing wrong with me. At 47 I accidentally forced my head up into a sharp object and causing internal organ and spinal damage, exiting through my tail bone, the photophobia/migraine/nausea/vomiting/burning eyes became part of my daily life. Along with: Memory problems, brain fog, short breath, fatigue, all over body aches, three seperate tinnitus sounds, chest/neck/forehead sweats, hip and leg pain.
At 49 I visited a Chiropracter, she said my reflexes were not good and that one eye pupil was locked and the eye eye pupil was extremely slow to react to changes in light. After many sessions with her, doing very gentle treatment, she got both of my eyes to work better and I started to get better and have less symptoms.
I also found that a huge massive change in diet has lessened my symptoms:
No Nightshade vegetables
I soak and activate my grains and nuts before cooking/baking with them.
I take 1500mg fish oil each day, these greatly diminish my photophobia.
I met a Lady who used to get photophobia and she found fish oil and krill oil got rid of her photophobia totally.
I also have been treating my thyroid and adrenal gland by taking my average temperature three times a day. Average should be 98.6. I was 97.2. and fluctuating badly. An adrenal medication stop my temperature fluctuating. I took B12, sea kelp liquid, adrenal support liquid under my tongue three times a day, after a month my average temperature was 98.2 and my symptoms had become a lot less, I could do more and others said that I was looking better. Bad photophobia/migraine is now once every three weeks but symptoms are not as vicious.
My heart really goes out to all of you, I know that what you go through is not easy. I pray that you can get better as I have been. Take care
Jacqueline Kelly on December 03, 2017:
I looked in the mirror one day & one of my pupils were huge I actually look like I had two different colored eyes , the doctor I saw told me that I had probably had some sort of head injury & I assured him I didn't he then sent of for a cat scan & nothing was found I saw another doctor at the hospital & he called all the students in & he said she has it Adies Toxic Pupil , now if I have a routine test or have to go to the hospital they always say to me what is wrong with your pupils ? When I mention Adies they say oh do you mind if the students come & have a look ,
Sweetsusieg (author) from Michigan on September 08, 2016:
Did you say'loss' of goose bumps ? I get goose bumps and they are actually painful at times over large areas of my body - which aren't related to cold or a 'shivery' thing.
I have a feeling that there hasn't really been many studies of Aides other than a lack of reflexes. I've noticed lately that I seem to be over reacting to certain things if I'm not in control of the situation. It may have nothing to do with the Aides - I'm not sure.
I'd still like to find out if it came about from that knock on the head I took as a young person.
Sherece on September 08, 2016:
Me again. In the last few weeks since I found this article I have done as much research as possible on Adies pupil. From what I have found, I believe it is more progressive than doctors know or tell us. However I have not found anyone that after all the tests and whatnot had received any real help for symptoms. I have found a Facebook group with over 800 members and ongoing discussion about Ross, Harlequins, Horner's and Holmes-Adies syndrome. These are all related conditions. Other symptoms I have had going on for quite some time that I now believe are related are breathing issues ( I thought I had developed asthma - but now think it is nerve related) chronic dry cough, one warm hand/one cold hand, and loss of goose bumps over large parts of my body.
The group is closed, you can search for it and request to join. I have posted a file on the page that I am hoping everyone will add to as a symptom comparison chart. If anyone reading this has Facebook, please search for Ross, Harlequin, Holmes-Adie and Horner's syndrome and join the group.
Sweetsusieg (author) from Michigan on August 09, 2016:
AdiesinPA - I am truly sorry I didn't get back with you sooner - for some reason I wasn't notified in my email of your comment. What does the diluted pilocarpine drops do for you? The last few times I've went to the eye doctor they give me double drops to open my pupils, but that just takes them to the 'normal' range for me. Heck I don't even need the cool shades they give out when you leave.
Pat - Hi!! Oh do be careful! I have taken to carrying a small flashlight with me these days. I just got so tired of not seeing where I was walking in the dark.
Sherece - Now that you mention it and I never connected it - I do have a patch of skin on my right foot (ankle side) that doesn't have any sensation - the skin almost feels leathery even. But other than that no where else that I can find. Mine was diagnosed by a neurologist due to 'head pinches' - the best words I can use to describe what was going on. Which truly makes no sense because I have heard there are no nerve endings in the brain to cause pain. I still have them from time to time. I still wonder if mine was caused by a head injury when I was young. My brother and I were fighting and he kneed me in the right side of my forehead knocking me unconscious for a time. Thanks so much for stopping by and commenting!!
I have found one absolute 'down side' to having Aides... I can rarely get anyone to look me in the eye - I think it scares them. I've noticed that even my family avoids looking directly in my eyes... Sad..
Sherece on August 08, 2016:
I began experiencing the whacky shaped pupils over 15 years ago. I would notice slight vision changes and when I looked in the mirror my pupil would be oblong or oval. These episodes would last from 30 to 60 seconds and seemed very random - sometimes several times a day and sometimes not for months. I also believe they happened in both eyes. I asked no less than 6 different optometrists and three different doctors about this and none of them had any idea what I was talking about. One finally told me it was probably a muscle twitch. I recently found one article online that called it tadpole pupil syndrome, but after reading this post, I believe it was an early symptom of Adies. These symptoms started when I was in my early 30's - I recently turned 50.
A year and a half ago my dental hygienist was the first to notice my different sized pupils. At that time I went to an optometrist and he told me it could have been something I'd had from birth, I should check old pictures and compare. At that time my larger pupil still reacted to light. He said I could see and ophthalmologist if I wanted, but didn't seem concerned. When I checked old photos, I found the dilated pupil had only started showing up that year. Over the last few months I have become more sensitive to light, and my vision is more blurry. When I walk into a dark room I feel as if I am blind in one eye and it takes several minutes for that to go away. A couple of weeks ago I went back to the optometrist and told him of my worsening condition. At this point I had done my own research online and Adies was one of the conditions I had read about. This time my pupil did not respond to light. He referred me to and ophthalmologist - I don't go for a couple of weeks, but I am almost certain I have Adies pupil.
Another symptom I have noticed developing over the years has been numb spots on my skin. I was wondering if anyone else has experienced this and, since it seems like a nerve problem, if it could be related. I have a large area on my back and along the side of my breast that has no skin sensation, also a patch on my forearm, and another one I just found on the lower left side of my back. I haven't experienced tingling or pins and needles in these areas - just loss of sensation. I doubt even if I am diagnosed with Adies tonic pupil, that an ophthalmologist would even know if the symptom is related.
Pat on July 15, 2016:
I have Adies Pupil in both eyes (diagnosed over 4 years ago) and have just returned from the Casualty dept at my local hospital. I tripped over last night at home (through not looking where I was going) and have a massive black eye and a bump on my head today plus some blurriness with my sight. Got checked over and everything is ok but thank goodness the nurse was my good friend and was aware that my pupils don't dilate properly!
AdiesinPA on July 12, 2016:
I read your story and quickly scrolled to the bottom to see if you were still active on this post and am happy to see that you are. Hopefully you will receive this update. I have Adies tonic pupil in my right eye, was diagnosed about 3 1/2 years ago when it "occurred" one day standing in my office at work... I experienced visual disturbances for months - I believe this was a result of ongoing nerve death that causes my Adies. Similarly, I saw neurologists and neuro-opthomalogists, but NO ONE was impressed or excited. I had MRIs, CTs, blood work, and more and no one seemed to care other than my neuro opthamologist saying that I could use diluted pilocarpine drops to control it and basically after a 1 year follow up I never needed to come back again.
So, I researched and researched and researched on my own! Everyone seems to have varying triggers but the common theme is deep tendon damage. The root for me is the ciliary ganglion which is made up of tendon and muscle that nerves travel through to make the eyes function properly. So I focus on supplements and food that are good for muscles, nerve health and tendon repair and the damage has not been reversed but I no longer get pain or have extremes (however I do still control mine with diluted pilocarpine). I'm hoping one day I won't need to.
Sweetsusieg (author) from Michigan on June 08, 2016:
Wow. Did they check your reflexes? That is how they gave the final determination for me. Keep us posted -Best of luck to you!
crls302ci on June 07, 2016:
This was a great read. I am starting to think I have the same condition. I work as a service writer, and one day I walked outside to check a customer in on a sunny day. All of a sudden I experienced extreme sensitivity to light. I walked into the bathroom and looked into the mirror and noticed one pupil completely dilated and the other small. I decided to call my doctor and get it checked out, and of course they told me to report to the ER immediately. After 2 days. CT, contrast angeo, multiple blood and urine test, then a wireless heart monitor was installed on me over night. Nothing found. A neurologist came to see me in the morning and she was very intrigued but had no idea. I got a emergency appointment with a known ophthalmologist. He was completely stumped. Almost no pupil retraction on my left eye, and also poor retraction on my right eye, (even though it seems fine to me) I got a MRI that weekend which was all good except of some "white matter" which they were not concerned about. So it took me 2 weeks to get a appointment with a neuro eye doc at Hopkins Wilmer Eye Institute. I am seeing him this Thursday. For the past 2 weeks not much has changed except the vision in the bad eye has gone to crap. A car has to be directly in front of me to read the plate number with that eye. I'm glad that if it is Adie's, I'm not going to die, but pretty bummed my eyesight went from 20/20 to crap. I will report back on Thusday or Friday with a update.
Doris James MizBejabbers from Beautiful South on May 16, 2016:
Just found this hub and you. I'm sorry you are going through all this. I've never heard of Adies, but I'm no stranger to eye problems, so I know how frustrating they can be.
mama26 on May 04, 2016:
That is the strangest thing! I would love to hear of other people experiencing nervous problems too. I definitely feel like I overreact to noise - loud or sudden. I do actively work to keep calm. By nature I think I get way too emotional. It feels like my reactions are hypersensitive to a sudden movement or loud thunder bang, etc. if that makes any sense. Now I wonder if some of it is related.
I feel like the doctors I've seen sort of have this attitude like "ho-hum just another adie's pupil." They don't seem to be too interested in all the weird symptoms - Ross Syndrome even less. I just have this feeling in my case there are probably a lot of things that could be related...but the symptoms are vague or not debilitating and so they are overlooked.
My left eye became tonic in 2013 and the right one just last week....they haven't constricted yet - but the neuro-op told me it can take years - they call it "little old adie's pupil." The left eye is drooping a bit on the lid...I was thinking that was from having to squint all the time and I'm definitely photophobic....going into Walmart just kills me! lol :)
Sweetsusieg (author) from Michigan on May 03, 2016:
I got a real dose of what can happen to the nerves in the last month. On the 8th of April my mini-pin was taken off my back deck by the neighbors dogs and eventually killed. I was having shoulder/arm pain (unrelated to Aides) my sliding glass door needs replacing etc... So suffice it to say I had a difficult time opening the door to try and save my dog. I had a BB gun in hand but did not have the strength to draw back the handle. I was terrified. My nerves went 'liquid' is the best way to describe it. I had very little motor control.
Then last week I was out on the back deck letting my other 2 little dogs go to the bathroom at night. I couldn't see a thing because it was so dark (again with Aides and the lack of pupil reflexes dark is dark no matter how you slice it) and I had left my flashlight on my desk. The neighbors dog was at the corner of my house barking at me. Again I lost most of my motor control and almost couldn't open the door, to get back in. When I tried dialing the phone my fingers just refused to cooperate. I attribute this to the Aides.
It got me thinking to my past and the various times I was scared or terrified. I have had the same reaction. Then I remembered another time when in the midst of my darn near convulsive shaking, I got angry. The shaking stopped almost immediately. So now I have to figure out a way to turn my fear into anger immediately if I need to react.
I'd really like to see someone who would be able to test my theory. That the nerve reaction of fear and anger are different. I think it would be an awesome subject area to test. The nerve synapses and their reactions.
It would be great to hear if anyone else has experienced anything like this.
mama26 on May 03, 2016:
I was diagnosed with an adie's pupil in my left eye 3 years ago around age 51. Came on with a migraine, went to the doc - freaked out - thought I was having a stroke. Had all kinds of tests - everything was negative...even tested for syphilis...all negative. Started doing massive amounts of research. I eventually went to a neurologist who couldn't find one reflex. But I was seeing him for lower leg/feet pain for 5 years which caused balance problems. The leg pain turned out to be B-6 toxicity and the feet pain was plantar fasciitis! Crazy stuff...stopped my little gummy vitamin and enriched cereal and breads and 90% pain free.
So weird. Anyway - after all my own research I discovered what I really have is Ross Syndrome. My Internist told me I did a good job researching and said I definitely did have Ross Syndrome.
I read somewhere that the symptoms can span 50 years and one of the symptoms was heat intolerance which I did have as a child. I would overheat really easily and can not stand any kind of hot water in the shower or on my hands/skin. It burns me terribly. Also I don't sweat very well. I do sweat - but it isn't efficient which explains why I would overheat and take hours to cool down from exercise or just running around as a kid.
Last week the other eye went tonic and I went to the neuro-opthamologist....and he confirmed it. Guess I'm lucky the guy lives across the street from me. None of my doctors have every been too impressed with my eyes! He told me there was a 10% chance it could go to the other eye - but I always figured it probably would. I do have blurry vision up close - but my distance got better in my left. I am experiencing some double vision at night while watching tv and also reading up close. My regular op dr said it was a muscle issue probably from fatigue...but gave me a double prism correction which has been wonderful for watching tv. I just bought progressives and I'm having a heck of a time getting used to them...feels like everything is moving around when I move my head. Not sure how that is going to work out - I hate them!
I am interested about the symptom of nervousness. I totally feel like I overreact to stimuli - or if I react to something loud. I also saw a symptom of psychiatric disorders and wondered what the heck that meant. I could say by nature I'm an emotional blubbery baby - and now I'm wondering if it has something to do with this syndrome. I try to "control" some of this...I do have a faith life and try to put things in the Lord's hands. It really does have a calming effect when it becomes a habit! So I was wondering about the nerves you were talking about and shaking. I did notice my hands with a bit a shaking and I got worried thinking it was Parkinson's or something - and now I'm wondering about that too being part of this.
I also have migraines. My mother had them - one of my daughters has them. It's not very often - maybe one every 3-4 months - but it will knock me out for days. Since menopause it seems like they are not as often...???
Thanks for having this board....and blessings to all! :)
Sweetsusieg (author) from Michigan on February 25, 2016:
I am not sure why you have pain - generally there is no pain associated with Aides Tonic Pupil. Is there something else? an underlying condition? Is it your sinuses maybe? I haven't experienced any specific type of pain with this condition. Maybe you should speak with your Dr. about that.
DebO on February 24, 2016:
I have recently been diagnosed with Adies Eye. My left pupil is huge most of the time and the right is as usual. I have frequent headaches and the side of my face is in pain most of the time. Maybe after reading all of this, this is why I sweat all the time. Past menopause and live with it. I live in a cold house and wherever I go i need the cold.
Sweetsusieg (author) from Michigan on January 24, 2016:
I think that because this is a non life threatening condition it's more of a curiosity rather than any sort of study. My eyes got weird for quite a while - mostly noticed by my family or friends of "WHAT'S GOING ON WITH YOUR EYES??" and "Freaky!!" No matter how hard I'd try to get them to go back to normal they did what they wanted. Scrunching my eyes, rubbing my eyes opening ad closing never did a thing for me.
I am right handed and it was my left eye that went first. I have heard that generally only 1 eye is affected... Both of mine are.
As far as what they look like now that the cycle seems to be 'complete' - they look 'normal', the shape is not off, the pupils are small but other than that my eyes 'look' normal. So do not despair!! Eventually all will be well and you will have gotten used to it. Just think as a guy you don't have to every worry about plucking your eyebrows!! Now THAT is a challenge!
Another 80's Eye on January 23, 2016:
Hello Sweetsusieg!Wow great article & very helpful to many people as i can see, including myself! im 32 male just be thrown on the adies list without any information what so ever! I had to google it to find out what was wrong with me! But like you i had a funny situation. When my eye specialist came in he checked my eyes for about 5mins said yep its definitely an 80's eye! Instantly i thought he could tell i was born in the 80's because of my eye or what condition in the eye did people in the 80's get? but i never had the chance to talk. he said yep you got an adie's eye all looks good nothing else wrong nothing can be done. if you get dizzy take tablets & he walked out! id say i was there for 8mins & paid $120. all i got was a receipt & no information at all. So anyways, I'd been getting dizzy spells for a few yrs and countless trips to doc's and specialists had seen me complete an array of medical examinations and left me with just as many possible outcomes but no answers. Over the last few years although my eye hadn't yet shown any signs yet of pupil enlargement i had been getting headaches & dizziness to the point of vertigo and vomiting. Most of the tests & investigations i had to push for & pay for it if wanted it done sooner as i was sick of feeling unwell & knew something was very wrong with me! i've had 2 brain mri's because i was certain something was wrong & couldn't believe it showed nothing. well the second one same same no different! shrinks because its all in my head, anxiety & depression tablets because thats what it must be i just need to relax more! lets just say after 2 months taking anti depression meds i could feel some crazy sensations in my brain & it really freaked me out!
So last few yrs my condition symptoms that developed: Sweating alot and get nervous easy. major dizziness spells even before noticed a change in my pupil? i don't know how or if this can be correct but like i said the eye specialist that diagnosed me didnt even tell me anything! but yer i just think i hadn't seen my pupil affected at this stage. I get lots of pimples now because i sweat alot but i haven't lost any of my reflexes at all. I suffer from sun / light sensitivity & found myself not wanting to go out during the day & preferred the night. difficulty in reading & concentrating now & feel like i have obsessive compulsive disorder because i keep blinking and looking around as a reaction to my eye not focusing as it feels strange to just look at something even simply typing this. If i stare or focus i can feel my eye hurting and so im continuously adjusting my sight helps relive this sensation. My condition is only just starting obviously but i do have some questions if you have time to help me plz. I have seen many of the adies eye's look cross-eyed or lazy eye not staying in its normal position. is this a result of the condition or does the eye location not get affected! my eye currently sits and operates at this stage in uni sink with my other eye. How have your eye movements changed over the yrs? reading through your wonderful article one interesting thing came to mind. it would be interesting to see what dominant hand people are and which eye/s are affected or affected first. I wonder if there is a link or a pattern? I am left handed & my affected eye is my right eye. ( As its my knowledge that the opposite side of the brain controls your movements on the opposite side of your body.) I really could do with some good information & any articles that you found to be very helpful besides the general pages on google about this would be great. wonderful page and thanks!
Sweetsusieg (author) from Michigan on January 20, 2016:
LOL!! Nope it's not just you - welcome to the club!!
Trish on January 20, 2016:
Omg! I am so relieved to read this. It's not just me!
Sweetsusieg (author) from Michigan on June 27, 2015:
Prayers coming your way!!
Faisal1990 on June 27, 2015:
Its been roughly 8 years for me as well since i had it in one eye. I am going to have it checked tomorrow. I tried getting my left eye respond in light and it seems pretty fine for the time being but I do have a feeling that it is getting affected as their is a slight pain, the eyes seem to stretch.
I hope thats not the case. I do drive in the night and actually all the time as over here the roads are pretty lit up and there is always traffic on the roads.
I am facing severe difficulties while reading to be honest. So I am going to go and get this sorted out tomorrow with the dr. Do you think I should be asking some other questions? As currently no brain image tests are done for me. Earlier, back in 2008 my dr diagnosed me only by checking my pupil size and tendon reflexes.
I wish this can be minimized. Hope things get sorted out tomorrow. Pray for me.
Sweetsusieg (author) from Michigan on June 27, 2015:
I am so sorry to hear of your plight. For me it started in 1 eye then seemed to migrate to the other - I want to say it was at least 8 years but less than 10 when the 2nd eye became affected. From what I understand not everyone has it in both eyes, apparently I am an 'exception to the rule' - YAY!!! (not)
Once your brain adjusts to what is going on it's not so bad. It's a reflex issue. Generally all the time the eye focuses in and out - that is an automatic reflex - when you have Aides Tonic Pupil - it stops. That is the reason for the need of eye glasses - because you cannot auto-focus. If you don't like eye glasses - contact are also an option and they work quite well. I prefer them.
It is good that the medicine the Dr. put in your eye worked for you!! They put the drops in your eyes to open the pupil so they can see inside the eye. Here in the US they give these really dark plastic lens things to wear when you leave the office. When they use those drops on me it just opens my pupils to 'normal' size. The last time I went she put 2 -3 drops because 1 drop doesn't work at all. It is blurry because you couldn't auto focus.
As far as how much it has affected my life - hmmm... well I don't have a percentage. But since both of my eyes are now pretty much fixed and don't dilate driving at night is difficult so I try to avoid it unless we are having a full moon - then there is plenty of light for me. Driving in the rain at night when there is no moon is the worst for me.
I do use a lot of lighting such as lamps etc.. at night. I don't watch TV in the dark - I will fall asleep no matter what I am watching. That is different for me from when I was younger - of course that could be age!! The worse thing for me is when I get nervous - usually doing something for the first time, under pressure, with a clock ticking... My nerves are trying to react to the stress and they aren't doing a very good job at it! I get what some would deem 'jumpy', my hands don't always go or do what I want them to. When I can relax and am not under pressure I am generally fine.
As of right now - even in this part of the world, nothing can be done for our disorder. It is neurological - given that the reflexes no longer work as they should.
I wish the best for you - remember there are many things that are much worse than this disorder!! It's not going to kills us, we will not go blind from it. It is a slow progression so at least we can get used to it.
Blessings to you!!
Faisal on June 27, 2015:
Hi Sweetsusieg, i was diagnosed with adies tonic (right eye) back in 2008. I live in UAE - Dubai.
I do have far sightedness as well since 2006.
Since i was diagnossd till the past few days i was having no issues at all with my vision but lately I have started having issues which include severe impairement while reading with glasses on (just to mention that i have had the same issue back in 2008 and then I stoped wearing glasses altogether).
Due to my busy working conditions, i never paid much attention to it and my dr said it wont go any more bad.
I am ok with sitting in the dark (atleast for now... my room is majority of the times dark). The reflexes were not equal when checked the last time (2008) in both of my knees.
My major problem is now while using my mobile or focusing on things which are very close to my eyes (like my hands or arms or my mobile screen).
I have been very depressed since the past few days thinking that I wont be able to lead a normal life and as u said after seeing it all, all of sudden not being able to see is what scares the hell out of me. I dont want to be depended on anyone. In this part of the world, nothing much can be done about my issue, the last dr I went to just told me to live with it (two days ago) and on top of that, she put some drops in my eyes which made everything go blurr for a few hours. She didnt inform me before hand about the side effects and neither she asked me if I drive or not (it was night time as well).
I also wanted to ask you that you were first diagnosed with adies in 1986..were u having the issue in both of your eyes on only one? If it was only one, after how long you started having in the other? (Just wanted to have an estimation, how long do I have to get my stuff in order).
My daily life is getting affected dramatically (given that I work in a mall, that also in a store having to do everything with mobiles and computers - and I am 25).
I am going to get myself cheked up again tomorrow by a better dr (i hope so).
One last question...
How are you doing now? And how much you think this disorder has affected your life (like 20% or so?)
P.s. i dont want to live like this :(
Pat on April 24, 2015:
I hope so! I just wondered if the medics would have reservations about surgery when I have Adies?
Sweetsusieg (author) from Michigan on April 23, 2015:
Since Aides is neurological it won't help with that part of it - but I am sure that it would help with the 'eyesight' part of it.
Pat on April 23, 2015:
Hi ... I just wanted to ask if anyone has ever considered laser eye surgery?
I need glasses for reading and also distance but I'm not sure if I would be a candidate for laser surgery as I have Adie's in both eyes. If anyone has ever asked their opthamologist, it would be interesting to hear what they said.
It would be great not to wear glasses again even though I would still have to wait for my eyes to "catch up" with each other!
Sweetsusieg (author) from Michigan on March 31, 2015:
That is very cool to hear!! I did not know it was possible - good to know.
Pa691 on March 31, 2015:
Me again - just wanted to provide an update! I went for my 6 month follow up to the neuro-opthamologist who I see, and he was surprised to see that my eyes are "less tonic" than before. He said there may have been some weird reason that they were acting like I had Adie's (viral? inflammation? etc?) and now they're almost better. Too weird. So I guess it's a possibility to have symptoms of Adie's, due to another cause, that can clear up. I'll update again if anything changes, just since it's kind of interesting and maybe other people will experience the same thing!
Sweetsusieg (author) from Michigan on February 15, 2015:
You are very welcome!!
cook79 on February 15, 2015:
Hi there, I am an English mum of 2 girlies. The eldest aged 8 years has just been diagnosed with this strange condition. I am really pleased to have found this blog, as it has been very tricky trying to find information about the effect this condition has on day-to-day living. She is currently under investigation by an Opthalmologist, although due to the way our health service is organised it's taking a while. We noticed the condition back in Sept '14 and it only affects her one eye, where the pupil is generally dilated. She displays signs of excessive sweating from her palms and soles of her feet and also has an autoimmune response to changes in heat. (hives/urticaria which are controlled with antihistamines) I have read to her, some of the responses from this site, and she now knows that she is not alone. Thank you
Sweetsusieg (author) from Michigan on February 10, 2015:
So were you diagnosed with Aides? I've not heard of medicine to help with it before. Or is the medicine to help slow down the process?
AYESA on February 10, 2015:
FINALLY PEOPLE THAT FEEL WHAT I FEEL......
I was diagnosed with aide tonic pupil 4 1/2 years ago, I have 1 large and one small pupil, the only weird thing is that the large pupil starts to go big, small, big, small, for about 45 minutes straight then stays big but during the time its changing it hurts and my vision is blurry I have a video on you tube https://www.youtube.com/watch?v=5Sh3lj3-reY and https://www.youtube.com/watch?v=5Sh3lj3-reY . I have been seeing a Neuro Opthamologist and have not help me at all, have done many test, I have spent time hospitalized and treated as a test subject for medical students. Until one day my Neuro Opthamologist had the greatest idea ever to see a neurologist (I saw one when all this started but neurologist insisted this had nothing to do with neurology) well I went to see a neurologist and I explained my symptoms dilated pupil, cant drive during night lights turn into exploiting fireworks and cover my sight, pupil changing sizes for 45 minutes or more 7+ times during day, blurry vision, headache, falling sleep all the time, pupil does not react to light but to accommodation and the other is small and reacts normal but slow. To make long story short Neurologist started me off with NORTRIPTYLINE the first dose was low but I notice that my pupil wasn't going big, small,big, small for 45+ minutes, I CAN NOW DRIVE AT NIGHT, I DON'T HAVE THAT MUCH BLURRY VISION, (EVEN THOUGH I NOTICE THAT MY VISION IS PERMANENTLY DAMAGE IN THE EYE WITH LARGE PUPIL)where still working on the dosage because as the Neurologist explaim to me that my body gets use to the medicine I start going back to normal pupil changing , blurry vision, headaches, they need to up my dosage I ask if this will happen all the time and he said no. My body will eventually get used to the medicine. good luck to everyone, sometimes I felt that no doctor could understand me because all the test would come out normal but now I am happy.
Cindy Sheets from Oklahoma on February 08, 2015:
Glad I found this article. I too have Adies Tonic Pupil, in one pupil affected only, & is "stuck" in a fully dilated condition. Mine is from a rare injury with dental needle, (septocaine injected to artery). I too had to go through with scans, imaging, etc. Finally, I was diagnosed at Dean McGee Eye Institute in Oklahoma City, Oklahoma. My Dr, Neuro-ophthalmologist, Dr Farris, explained the condition to me an also informed me that years later the affected pupil will eventually shrink down. David Bowie, (the singer) also has this condition from an injury. When he was a young teenager got into a fight with his best friend over a girl. He was punched in the eye & has had a tonic pupil ever since. That is why one of his eyes looks darker than the other (he has 2 blue eyes of the same shade of blue). I do get funny looks, I hate it! I use eye drops to shrink my pupil down to look like the other one. By evening time, the affects of the eye drops have worn off. I have lost the ability to focus with the affected eye, of course. Night driving is horrible because, in a normal eye, your pupil will constrict with oncoming lights from cars, I get the full light straight to the back of my eyeball. I have a friend who told me his sister had a tonic pupil but it was caused by a tumor on the pituitary gland, after surgery the affected pupil went back to normal.
Sweetsusieg (author) from Michigan on November 14, 2014:
I was a bit surprised they dilated some as well - it hasn't happened in so long. I could actually feel them going back into their 'normal' pin hole size later on in the day - a very odd sensation indeed!
Pa691 on November 09, 2014:
Thanks! I did go to a neuro and an optha-neuro a couple months ago, and they did an MRI which came back fine. The optha-neuro wasn't 100% sure what I have is Adie's but he said he "is confident, but not certain". Not too reassuring but I guess if the MRI came back ok I need to just relax and see what he says at my 6 month follow up this winter. I do wish I could get some definite answers. This is really unnerving.
That's so interesting that she was able to get your pupils dilated! I would have thought that if the nerves weren't working they wouldn't work no matter what!
Sweetsusieg (author) from Michigan on November 06, 2014:
Well, I had various shapes that would take place. The reflexes of the eye just didn't work properly. It couldn't move all at once so it moved in sections I guess you could say. I guess - it does sound weird what you are experiencing - I would almost want to make sure everything was ok and if you can go to a neurologist - make that happen. Just to be sure.
I went to the eye dr. today (yep sure did! but not my step son, boo...) she explained the light that I see at times. as we get older the gel like fluid in our eye can change, and even cause tearing in the retina, causing the 'light' experiences. She she did get my eyes to dilate (yay!! well no..) and checked all of that out. It was good.
After not having my pupils open for so many years it was almost painful and my eyes are quite sore tonight, like muscles would be after running.
She was very good at explaining what goes on with the eye and how 'dry eye' and excessive tearing can be helped by gentle eye massage and warm damp cloths. There are glands in your eye lids that excrete oils, the oils hold in the tears which keeps your eyes moist.
My check up was good - just need to re-adjust my prescription which I hope will help me see better again!
It seems each time I go I learn something new. I hope you get the opportunity to see someone soon about this.
Pa691 on November 05, 2014:
Me again. The shape of my pupils have been going crazy! Sometimes it's an oval as you described, sometimes one side of it seems to turn into a sort of rounded-triangular shape. This alternates between both of my pupils. Did you have experiences with any shapes besides oval? It's starting to worry me (as in this may be something besides Adie's) but I don't want to pay another co-pay for an appointment with my doctor if this is something that is normal for this condition- ha! I wish there were more resources out there for people like us.
Sweetsusieg (author) from Michigan on October 10, 2014:
Pa691 on October 08, 2014:
Thanks for the response! I think my eyes are both "happening" at the same time so hopefully they'll calm down within the next few years or so. I would rather have two small pupils and have trouble seeing in darkness than have people looking at me funny for their unevenness!
That's interesting about the light on the edges of your vision... I haven't heard of that yet, definitely keep us updated on what your step son says!
Sweetsusieg (author) from Michigan on October 08, 2014:
Well - Yes, it would pull to one side of the iris - leaving one side kind of round yet oblong. As far as how long everything took - I'd say about 15 years or so. But that was with both eyes for me, first one then the other. Now they don't dilate at all - nada... I can be in pitch black for an hour or so and it still be as dark as it was at first. That is the downside... walking outside without a flashlight. Common sense would say 'always have a flashlight'.. but my kids and grandkids REALLY love flashlights..
I'm going to talk to my step son (the eye Dr.) about a 'new-ish' occurance going on. I can be laying in the dark - my eyes are closed - and at the edges of my eyes I see light - of some sort. I'll open my eyes thinking someone turned on a light in another part of the house. So strange!!
Pa691 on October 08, 2014:
Thanks so much for your response! When your "Fish Eye" happened, did it seem to be off center in your eye? Like was the center of the oval in the center of your iris or was the oval pulled off to one edge but not the other?
How long were your eyes unevenly dilated (switching back and forth from one side to the other, it seems?) before they evened out and became small? I really would like this issue to "calm down" and even out but it seems like for some people it takes years!
It's so tough to get info on this and I really appreciate that you communicate your first hand experience!
Sweetsusieg (author) from Michigan on October 08, 2014:
I guess I called it my 'fish eye' my pupil would go oblong, oval stretch out on one side... Really weird looking to me. It felt like it was trying to open I'd say - for me that is. But to have it small and have it in a different area of the eye - no can't say it has happened. The other symptoms didn't happen until a little later in life for me.
Pa691 on October 07, 2014:
I am a 23 year old female possibly dealing with tonic pupil. Over the last two months I have experienced intermittent anisicoria (unevenly dilated pupils that come and go) that varies between eyes. Sometimes one pupil (usually the left) will "move" up in my iris toward the top and toward my nose when it is small. Went to a neuro-opthamologist at Penn and he said I have tonic pupil, but thought the pupil movement was weird. Has anyone here had experience with a pupil "moving" in the iris? I don't seem to have any of the sweat, reflex, etc. symptoms that some get.
Sweetsusieg (author) from Michigan on August 08, 2014:
Oh I can imagine! It is a rare condition here in the US and unless it is documented in your file, some Dr's are still puzzled by the symptoms. Just remember - it won't kill you! It's a pain in the ... eye... after a while the pupil dilation will stop and you should not notice anything. You will learn to work through it. Best of Luck to you!
Lisipopz on July 29, 2014:
Thanks. Hard for me to find any help. Am living in Zimbabwe. Even less known here by doctors. Think my eyes still have a long way to go before they stay fixed and dilated. My eyes are still at the flaring up and down stage. Really pleased you answered. It's quite isolating having something that others don't understand.
Sweetsusieg (author) from Michigan on July 28, 2014:
Nothing specific that I can remember - but then again it would be hard to distinguish between headaches. I've had headaches for so long now. My eyes do burn when I am very tired - but I thought that would be normal.
Lisipopz on July 28, 2014:
Hi just wanted to ask if you had headaches and exhaustion when your eyes were developing the tonic pupil
Sweetsusieg (author) from Michigan on May 15, 2013:
Since I am not a Doctor I truly cannot begin to assume it is one thing or another. I went through a battery of Neurological testing before I was diagnosed as having Aides. Mine was a gradual or over time type of thing that I didn't see a Dr. about until I was having a different symptom that had nothing to do with Aides. I would make certain to make all of my appointments just in case it is something different.
C. Huling on May 14, 2013:
Hi.... I am 38 and last year well walking into a store with my husband and 2 daughters my eyes felt like they were out of focus. I keeped shuting them and blinking but that didn't help. After 10 min.s or so I went to the bathroom to look in the mirror..... what I saw was that my left pupil was huge! I could not see any of my eye color ...just black pupil. I flushed my eye with water thinking maybe something had got into my eye , that did not help. It stayed that way ...after showing my husband & not knowing what to do we went home. About 2 hours later it was still the same, so I called my DR.s office and was told to go to E.R. where they did all kind of testing for drugs C.A.T. scans & more. 6 TO 8 hours into my ER visit I was told I needed to see a Neurologist. I may have Adies Syndrome it could take up to 3 weeks to get in so I should call right away. The next day I didn't have to call cause the Neurologist office called me... wanted me to come in right away. When I got to his office it had been just over 20 hours since I had notice my pupil ...by then it was almost back to normal size. He said he could not say either way if I did or did not have Adies?? In the past 12 months I have noctice hazy or grayish vision in that eye as well as having very strong eye twiches where my eye lid gets stuck for a few second before begin able to move again. I have notice it happens more when I feel stressed or upset. There has also been a numb feeling on that side of my face and acrossed my nose. The pupil has got bigger than normal 2 more times but not as big as the 1 st time I notice, and it only lasted 2-3 hours. Can you tell me if any of this sounds like Adies to you. I do also have lose of feeling in both hands and lots of what feels like muscle spasms..but I think that is not related. Thanks for your time
Sweetsusieg (author) from Michigan on November 17, 2012:
Thanks!! I'll check it out!
Pat on November 12, 2012:
I have just found the link between Adies and Sjogrens Syndrome that i mentioned 7 months ago - http://www.ncbi.nlm.nih.gov/pubmed/9412854 in case anyone wants to take a look!
Sweetsusieg (author) from Michigan on October 23, 2012:
LOL - I know, they do get excited don't they? I felt kind of like a toy that was being passed around from hand to hand being squeezed, prodded and poked by all. I think my highlight was having my step son with whom I had only met once in 26 years ask me to come and have my eye exam in his office. You know he jut wanted a peek!! But we are now friends so that is a bonus!
Will on October 23, 2012:
LOVED reading your description! Several years ago when my new opthamologist got all excited and started smacking my knee with the reflex mallet, I thought, "what the hell does that have to do with my big pupil?" Well, now we certainly know!
Sweetsusieg (author) from Michigan on September 06, 2012:
This is so true, we just adjust and play the cards we are dealt.
My daughter had a head injury when she was 3 she is 20 now, her eyes are very dark brown so it's hard to say when the pupils are small. She is beginning to exhibit some of the signs already. It may be a good possibility that this was the cause...
My husband also has difficulty in understanding my inability to see in the dark. He is forever shutting my lights off, in effect blinding me. When the family wants to watch TV in the dark... Well, I just fall asleep, can't see the rest of the house, might as well!!
Debbie on September 05, 2012:
Yes, I did have a head injury at 2 yrs. I fell down 3 steps and had a concussion and a hair line skull fracture. I am also glad that it is not just me that has trouble seeing in the dark. The worse time is going from outside in the sun to inside a dark room. I have to feel my way around and my husband does not understand how it is for me. I have also had to get a little nasty at work because they decided to save energy and have reduced or turned off lights in our stockroom and I cannot see to do my job properly. I have been there 28 yrs and told them that unless I get more light to see I was going to file a complaint through Americans with Disabilities. The next week I had extra lights turned on in my area but other areas are still too dark for me. My Eye Dr. told me that I should limit my night time driving and consider getting those bright white lights for my car.
I guess until a few years ago I never gave much thought to having Adies. I have had it for over 40 years and was given very little information at the time. It wasn't till about a year ago I looked it up on the internet and found out that sweating was a symptom. That explained why at times I sweat excessively and everyone else was dry. That gave me an answer to a question I always wondered about. I was not told about this 40 years ago. I guess when you have something like this at a young age you just adjust because you don't know anything different.
Sweetsusieg (author) from Michigan on September 05, 2012:
I think the conflicting things we read on the internet make a lot of folks confused from what to expect. I guess just live life, get what we get and go from there? It is kind of fun being an oddity though isn't it?
You seem to be about my age (from you description) do you by chance ever remember getting a head injury? I was knocked unconscious when I was about 12, that could have been the start of this for me. It would be lovely if someone was to do a study on us!
Debbie on September 04, 2012:
I first found out I had Adies around 1070 I was 10 0r 11 at the time. It started in 1 eye and I was told that it would eventually go to the other eye. For years I only had it in one eye and I don't even remember when the other eye started with it but now both eyes are closed. I have a great deal of trouble when it is dark in the room and I rarely drive at night. I was diagnosed by an Opthamologist and confirmed by a neurologist. I have no reflexes and I at times sweat profusely. I do not have the shaking but do have anxiety at times when in a stressful situation.Most eye exams I have had lately have been at the Wilmer Eye Institute at Hopkins. I did not realize how rare this condition was until the person taking the info. I think she was an intern said that Adies is something that you see only in a textbook but rarely in person.She was so excited to be able to examine me. A lot of the symptoms everyone describes with their vision I do not have or remember. I think that I was so young that I just adjusted and never realized that anything was different. I can say that my distance vision has improved greatly from 20/200 at 18 to 20/30 today. I wear glasses mainly for reading. I do find myself closing one eye or the other at times to see and I know that I can with both eyes open only look out of one eye and block the other so I can see clearly.
Sweetsusieg (author) from Michigan on August 27, 2012:
This I have not heard, I had read that the Dr. who had discovered it was named Holmes-Adie (hence the name). As of yet no one has told me that it is life threatening. My diagnosis had been made by a medical Dr. first, then verified by a neurologist, my eye dr's get tickled when I come in, I think it is more to check on my progress than anything, just to see if there are changes of any sort.
Rena on August 27, 2012:
I just got diagnosed today and I find it fascinating that all of us either only have it in the left eye or it started there. I am just glad to finally have an answer and that it is not life threatening. From what I have researched and been told it is necessary to have all of the extensive testing done before they can call it Aide's. Aide's means there is no reason for it. Tonic pupils can be very serious and life threatening. I read some posts where it seemed like extensive testing was not done. PLEASE demand to have all necessary testing done before accepting a diagnosis of Aide's.
Sweetsusieg (author) from Michigan on June 06, 2012:
I would have loved to see that!!
Anonymous on June 06, 2012:
There was a kid on America Got Talent last night. Said he'd been rejected his whole life both eyesconstricted. He was a Goth. He sang a beautful oera, for the first time, in front of anyone.
LightofGOD on May 30, 2012:
Hi thr,this blog was very cool.I had a dilated pupil for 5years.I had an accident and was hit by a metal gate on my head very hardly.After few days i started feeling headache.Then after few days i got this news that i have to live with it.Some Drxs said a virus is causing this.Some said its nerve prob.I don't know what the heck was that.I was really very worry and thought i would not be normal again although my pupil diff wasn't to much but same prob i felt that u did.But Al-Hum Du liaalah(Thanks GOD) now i am much better almost got normal again.I never took any medicine but kept praying and tried hard to forget this diff.I am thankful to ALLAH(GOD)for curing me.I pray for all of you who are infected.Allah(GOD)may cure you all.Amin
I believe the Light of ALLAH(GOD) will find and cure you...Best of Luck you awesome peoples
Sweetsusieg (author) from Michigan on April 21, 2012:
Jamie78 - I am not exactly sure when my pupils finally closed for the last time, but I do know it's been a while. Now they never open. There is an upside to that, I don't have to spend a fortune in sunglasses!! (ok, I always try to find an 'upside' to situations)
Some folks only seem to have it in one eye, mine eventually got to both. Which is par for the course for me, when I do something up, I do it up right.
Best of Luck to you!
Jamie78 on April 20, 2012:
I am a 33 yr old woman who was diagnosed with adies tonic pupil back in 96 when i was almost 18. Only one eye is affected & I still have 20/20 vision. Mostly made me feel embarrassed to look people in the eyes. My pupil would get smaller at night mostly during first few years & would feel like I was being stabbed in the eye. I wore colored emerald green contacts to try to mask it for a couple of years but then got pregnant & decided to give them up. I felt like it looked like a dead fish eye. Through internet research about 10 years I discovered the pilocarphine drops & go see an opthamologist every two years to get it prescribed; so bummed that they discontinued .5% :( Well I haven't looked adies up again until tonight because now my pupil went super small for the 2nd time in a couple months & it is still small & its been several hours. Back when it first happened and would get small it would only stay like that for a matter of minutes.
Sweetsusieg (author) from Michigan on April 13, 2012:
That is very interesting... I can see a few things that might point to something more in me. I have a difficult time making my way to a Dr's office. Oh heck I'll admit it, I just don't like going.. Plain ad simple.. The aches and pains.. eh, I figured they were cause I was getting older.. I do have my fair share of them though.
Thanks so much or coming back and filling me in!!
Pat on April 13, 2012:
Hi Susie - Sjogrens is an autoimmune disease of the salivary and tear glands usually affecting women aged 40-60 but may take many years to obtain a diagnosis as the symptoms are often put down to the menopause or just getting older.
The main ones are:
extremely dry/sore eyes and dry/sore mouth/throat and some people experience dry skin or vaginal dryness
Some swelling of the salivary glands in the face/neck
Some people also have Reynauds Syndrome which is when your hands and or feet turn white and become very painful when they are cold - even just in the refrigerator section at the supermarket - and then go blue/red as the blood supply returns.
The only medication is lubricants for the dryness and painkillers for the aches and pains.
Just having a diagnosis helps though because then you know what you are dealing with.
I did research on the internet about Adies when I was diagnosed and found one link that suggested that Adies was another part of Sjogrens - but I can't find it now!
Sweetsusieg (author) from Michigan on April 11, 2012:
I have never heard of Sjogrens... What exactly is it? I have not been sent for a scan myself other than the ones I had years ago (sleep deprivation etc..)
I've wondered if there were any programs of aides research myself. It might be interesting to participate.
Thanks for stopping by!!
Pat on April 11, 2012:
Hi - I was diagnosed with Adies pupil in both eyes (although my left eye is much worse) 4 month ago. I have suggested to my opthalmologist that it might be Holmes Adies Syndrome as I had already been sent for nerve testing as I have no reflexes in my ankles and also sent for hormone tests as I have developed excessive sweating - but she was quite dismissive although she was very excited to see a case of Adies Pupil.
I also have Reynauds Syndrome and Burning Mouth Syndrome and some symptoms of Sjogrens Syndrome - I am not quite falling apart although all of the little symptoms do get me down sometimes!
I just wondered whether anyone else has come across a possible link between Adies and Sjogrens as they are both thought to be autoimmune conditions?
I have been very interested to read all of your comments as I do not know anyone else with Adies and would also be willing to take part in any research.
My sight is not as good when driving at night, but otherwise not too bad with reading glasses. I have found that investing in a Kindle and setting the font to a larger size has helped with reading, as i too am an avid reader!
I have also had visual migraines for about 2 years - no headaches just weird visual stuff as though I am looking down a blurry tunnel - and usually occuring at bedtime as I switch the light off and go in to darkness.
By the way, my consultant sent me for an ultrasound scan behind my eyes as she had seen some calcification of the optic nerve - has anyone else been sent for a scan?
It's nice to know that I am not the only weird one!
Sweetsusieg (author) from Michigan on April 02, 2012:
strevino14 on April 02, 2012:
If any of you have a Facebook account, please join the
"Ross, Harlequin, Holmes-Adie and Horner's Syndrome" page. It is very informative. I have learned so much on this page about my condition.
Sweetsusieg (author) from Michigan on March 13, 2012:
I am sorry that you're having to go through this! Particularly that you are a reader.. I too am an avid reader and yes it will effect your speed, no help for that. I guess the best thing I can say is it gives you time to enjoy the book... The blurriness seems to get worse as you grow older, it gives you time to slow down and look at things more carefully.
I had to have glasses, but some of the time it doesn't help and my eye Dr. says it will pretty much always be that way. The more tired you are the worse it will get. I sometimes buy the 'large print' editions of books just to make it easier on me to read.
When your pupils get to the closed and fixed stage the sensitivity to light will no longer be an issue for you. Your need or want for light will be important though! Get some good reading lamps!
You may find that many types of substances will have an adverse effect on you as well. Alcohol is the only thing that my body can tolerate (in small doses). Caffeine at times will cause me to have the shakes but since I have them most of the time anyway it seems normal for me. It's just the nerves talking to each other. Apparently they are having an entirely different conversation from what I truly want!!
I'm so glad you stopped by to share you story and please keep me updated!!
crazyeyez on March 13, 2012:
Hi My name is Andi, I am 18 and am experiencing some of these symptoms.
First off, my left pupil is noticeably more dilated than the right, just about all the time (especially in low-light or under certain medications like Adderall for my ADHD.)
They have been like this since grade school, I can recall my school nurse requesting I have my eyes checked, again, because it showed up prominently in a school photo. Vision was perfect, I got the drops to dilate my eyes, it worked (I'm pretty sure it did, anyway) and some awesome "rock star" shades :P (I don't remember if my pupils we're 'normal' after the drops wore off, the school nurse and my dad didn't say anything, and I got checked a few times after that-all good.)
I noticed the pupil difference again when I was 13-14, my friend pointed it out after some inhalation. :x Ever since then, it's never gone away. I sometimes get distracted and just gaze at my eyes, because They're interesting to me :p My eyes are a ever-changing mixture of green, blue and grey so it is pretty noticeable.
This is the really crappy part!!! I'm a huge book-junkie! I absolutely adore reading and have since I was young. My eye exams have always tested perfect as far as I remember, even with my strange pupils. But recently (as in the last year-or-so) I can't keep my eyes focused while reading to save my life. They will just 'lose control' I guess I could say. When I try to re-adjust and refocus, it only works for a second, then back to blurry. It does feel like my eyes are crossing sometimes. This has dramatically reduced my words-read-per-minute score, I used to be a speed reader, now my eyes just can't keep up.
When I'm in class though, I can see the board just fine, sometimes my eyes go out of focus but that is mostly when I'm tired. I have also had more headaches recently, with moderate light-sensitivity.
It is nice to share my story with people who have similar issues. I am hoping to get this resolved when I make my eye exam appt. I will try to keep you updated. Thank you for sharing and letting me share! :) Have a beautiful day :)
Sweetsusieg (author) from Michigan on February 23, 2012:
Have you noticed a lack of reflexes? When you go the Dr. and he taps your tendon below your knee? I think it's something inside the brain, the nerves don't talk to each other correctly. I would love to see more studies done on it! I'd be a guinea pig for them!!!
Thanks for stopping by!
Els on February 22, 2012:
Hi, I been diagnosed with the same condition since 2003. I noticed that my left eye pupil changed its color to almost like bluish, at first I said am I becoming Caucasian, coz I am actually Asian. I have not heard or known any Asian with Adies pupil,syndrome. The symptoms are the same as what you described. It gets worst when my eyes are tired or did not have enough sleep, I cud not stand the glare even the lights inside my room. I can also feel the socket of my eye is bigger. I suspect that the reason why I have this was because I had my left ear infected and my left wisdom tooth impacted and got infected too. Each morning before rising, I massage my left eye and sometimes I rub both hands to warm and cover my left eye to relieve stress. It helps. I have tried pilocarpine once but I don't like it is uncomfortable. I just hope someday this condition go away or I hope doctors will find some therapy help like exercise or vitamins to take.
strevino14 on February 01, 2012:
About a year before being diagnosed with Adies, I was having nauseating headaches, lightheadedness, gray vision in my left eye (affected eye), and had to take my glasses off in order to read a book or a restaurant menu. The latter symptom was the main reason why I went to my Optometrist. He examined my eyes and told me that my vision had gotten better...again (this was the fourth visit in which my vision had improved). I then got a new pair of glasses, but I was still having all the symptoms.
One night, while in bed, I got something in my eye and asked my daughter if she could look to see if she could find anything in it. She looked and then jumped back in surpise with the weirdest look on her face! She scared me with her look, she looked like she had seen a monster in my eye. After she was able to speak, she told me that my pupils were not the same (this really freaked her out). I got really scared, thinking the worst. The next day, I went back to my Optometrist and after looking at my eye, totally freaked out and started looking through his medical books. He looked nervous and excited at the same time. After what seemed to be forever, he emerged from his books and told me what he "thought" it was, but that he was going to have to refer me over to a "world reknown" doctor for a true diagnosis. There were three things it could be: an aneurysm in the brain or a Pancoast tumor or Adie's Tonic Pupil (he was more than sure it was the latter).
3 days later, I was at Dr. Tang's office (mind you, to get an appoinment with her, you have to wait a few months to get in)! She diagnosed me with Adie's.
After the diagnosis, I went back to my optomestrist, because of the earlier symptoms and because Dr. Tang said that I absolutely needed to wear sunglasses, since my left pupil wouldn't dilate. He then asked me to try something for him....to try contacts instead of glasses, then said to only put one in (in the good eye). I did, and he then gave me a brochure to read and voila! I was able to read comfortably without getting nauseated. He then had me read all the letters on the other side of the room, and to my surprise, I was able to read even the tiniest letters at the bottom. It was really weird how I could see just as well as having them both in. He said it was because my right eye was pretty much doing all the work alone anyway, this way the "tonic" eye would now have to work harder because it didn't have a contact to keep it lazy.
To this day, I have being able to read comfortably. Only downfall, is that if something or someone gets in the way of the eye wearing the contact, everything gets blurry, since you don't have a contact in the tonic eye. It is something you have to get used to though, but you will most definitely enjoy not having the feeling of nausea, lightheadedness and headaches.
I hope this information helps you and everyone else that have this syndrome.
If you want any more info, let me know, I'll be happy to share. :)
Sweetsusieg (author) from Michigan on January 28, 2012:
Now that I am not sure. At one time both my pupils would contract and dilate at different times. Now they are both constricted and never open, even in full dark.
Nicole on January 28, 2012:
He wanted my left pupil to constrict to fit with my other eye during the day.
I'd hope that he knows neurological disorders! I'm still thinking about getting another opinion from another neuro-ophthalmologist that isn't too far from me. Maybe they would have more experience? Don't know, can't hurt. I can bring him my MRI and CAT Scan images.
LOL YAY! hahaha OH! In that group on Facebook (one of the above posters gave us the link), they showed a picture of one of them with Adie's wearing a filtered contact. It makes the eye appear to be brown, but it helps with the light sensitivity. I might ask my regular eye doc about it, when I go in to talk about my glasses. :) Maybe it'll help better than those painful pilocarpine drops.
Do all Adie's Tonic Pupil cases turn from having one blown pupil (large, can't constrict), to both being blown, that eventually constrict and can't dilate? Or is that based on the individual and the severity of their disease?
I wish there was more information on this. It feels like I've hit a dead end in my research. :(
Sweetsusieg (author) from Michigan on January 28, 2012:
Hmmm, I'm not sure how the dilating of an eye helps, but well ok, I guess. I suppose it might help for night vision but only at night? During the day if your pupil isn't allowed to close wouldn't that do more harm than good?
As of right now the dilating drops don't really work on me. They only did that once to take a good look inside. It only opened about 1/2 way, so I didn't need those fancy sunglasses.
Yeah, it's sad that we should fit in with what is termed the misfits. Rather than being unique we are misfits? What's with that?
BTW - the pic of your eyes are GREAT!! It shows what I was talking about. One big and one small pupil. I didn't get the opportunity to have a pic taken of mine when they were doing weird things.
I just got to thinking, it is possible that the Dr. who is prescribing those drops doesn't realize this is a neurological disorder? Dilating your pupils, to me, would be for cosmetic reasons. Just a thought or question...
I guess there is an upside to this.. as it progresses you won't need sunglasses during the day!! So it will save you money! YAY!! Always have to find an upside!
Nicole on January 28, 2012:
Thank you for the link, I clicked to join. :)
Yes, I read your post. My vision at night isn't so bad, but it really with bright head-lights. It gives me a hard time and I have to stare at the white line on the right side of the road in order to make sure that I can see where I'm going. It's very blinding!
I live in Florida, by the way.
As for the eye color thing, it makes people look at me differently and so far a lot of people have mentioned me joining a band, namely Marilyn Manson's. I see the humor in that, but then again, I find it a bit saddening that I'm told to join something that is filled with misfits and "freaks" (I love Manson. Just saying!). Doesn't feel too good!
I don't think I'm going to get my eye drops diluted. The only pharmacist that carries it and can make a diluted amount is 3 hours away (one way) and it'll cost a hefty up-front price, even though it'll last me months. I would have to rent a car for the trip and I can't see forking out that much money just to get an eye drop that "helps" but doesn't "cure".
I guess I'm going to have to learn how to deal with this without putting those stupid painful drops in my eye everyday.
Oh, question for Strevino: You said you put a contact in the non-affected eye to help dizziness. How does that work? I wear regular glasses (strong prescription), and am going to go to my regular eye doctor to talk about bifocals and new sunglasses. Should I ask about his knowledge with Adie's, dizziness, and if contacts would help?
Sweetsusieg (author) from Michigan on January 25, 2012:
Yes, my neurologist told me many years ago that Aides was related to the nervous system. This would explain the shakes I get. Thanks for the info!
Ravelio on January 25, 2012:
I found a really great resource for us folks with aides syndrome, it's a Facebook page dedicated to autonomic nervous system disorders, hopefully this link will work, you have to ask to join, but there is a lot of info all in one place http://www.facebook.com/groups/ross.and.related.sy...
strevino14 on January 24, 2012:
Nicole, I don't know where you live, but Dr. Rosa Ana Tang is an excellent dr. She is at the University of Houston and she was the one that diagnosed in November of 2010.
I have just learned to cope my "weird" eye. Mine is the left also. I wear contacts, but only in my right eye. It has helped with the dizziness. When I was wearing glasses, I would get dizzy and nauseated all the time. My regular eye doctor suggested me wearing only one contact and that has helped a lot with the dizziness.
I chose not to use the drops. I didn't want to deal with the pain. When you learn to cope with it, you end up embracing the uniqueness of who you are.
When I tell people about Adies, all they can say is "Cool!" LOL....Sometimes it's not cool though, especially when it starts getting dark outside (dusk), my vision grays out and I really cannot distinguish much. I try not to drive during this time. During the day, I HAVE to wear my sunglasses...no ands, ifs, or buts about it!!
I think yours is cooler than mine though, because you have blue eyes...mine are really dark brown, so you can't really see my dilated pupil unless you look at it in the light.
Anyway, I hope this helps. It does help a bit knowing that we are not the only ones out there with this "uniqueness". I don't know if you read my previous comments, but if you haven't, I encourage you to do so. I explained everything I have gone through. Sweetsusie has been a great listener and helper.
Nicole on January 24, 2012:
Yea, Pilocarpine is normally used to treat glaucoma. However, the neuro-ophthalmologist told me that it'll help with light sensitivity by constricting my pupil. I only used the 1% drop once and it was so painful and blurry that I stopped taking it. I talked to him yesterday about it and he wants me to dilute the drops. (My prescription is one drop in that eye once a day (unless I'm staying home, then to not worry about it) for the light sensitivity)
My blurriness is only in the left (affected) eye, and it's very disorienting, leading to dizziness and headaches because of the way things look to me now.
Let me know if you can see this picture, it's the only one I have right now, where you can see my pupils:
I've only seen symptoms since November of 2011, nothing before that, that I remember. I only noticed my pupil being blown while starting my new job. I didn't think much of it, but my family and friends (lots of nurses!) were worried and told me to go. The ER told me it was just anisocoria, then the ophthalmologist told me it could be Adie's, so he referred me to the neuro-ophthalmologist (the same one I went to a few years ago because I have issues with my optic nerves being shaped a bit funny (they won't go into detail, which is annoying). I'm questioning going to see another neuro-ophthalmologist but with only 500 in the United States, it might prove to be a bit difficult.
I'd like to know the progression too! It just seems very different for everyone, so far, which is definitely interesting.
P.S. I've learned to read with my left eye closed and my right eye open...sigh!
Sweetsusieg (author) from Michigan on January 20, 2012:
Honestly I am not a Dr and couldn't venture to guess your diagnosis. I would suggest you make an appointment with your eye doctor to voice your concerns. I'm sorry that I cannot be of more help!
himan257 on January 20, 2012:
hi sweet susieg ,my one eye has dilated pupil,do u hav any thing related to diagnosis or relaxation of this dilated pupil cuz it gives a lot of pain,during my work on pc..
Hope u will help me
Sweetsusieg (author) from Michigan on January 18, 2012:
Eye drops? Is that something new? Everything I have heard and read tells me there is nothing to be done. Isn't pilocarpine used to treat Glaucoma?
I think my blurriness comes from my eyes not having any reflexes so they can't adjust. I couldn't venture to guess what is going on with your eyes. It seems pretty soon for that.. Unless you have had it for a long time?
For me it was a gradual thing, it took me better than 10 years for a diagnosis. Then that was done by a neurologist (that is not to say Opthamalogists and Optometrists can't do the same!!) It was just they were looking for something else and discovered this.
It would be lovely to find out the progression of Aides, but then again from what my readers have told me, it can go any direction!!
Best wishes to you in this. It's still very much a learning experience for me, everyday brings something new!
Nicole on January 18, 2012:
This has been mighty helpful for me. I've been having issues since Nov 2011, and went to the doctor in December, and finally got my official diagnosis January 2nd, 2012 with Adie's Tonic Pupil. My left eye is my problem one and it's a pain in the rear! The pilocarpine drops the doctor gave me hurts more than helps, so I'm having to go back to him for another eval. The blurriness is happening with things 12 - 18" away as well as close up. It's giving me headaches.
Thank you for posting this. It's hard enough finding doctor type information, let alone personal experiences. Thank you!
Sweetsusieg (author) from Michigan on January 11, 2012:
I begin to wonder if maybe they don't need to do a more in-depth study of this condition. The information that is available dates back to the 40's...
I'm so glad that you found this helpful...
Ravelio on January 10, 2012:
Thank you so much for these posts, I feel like I am not alone. I was officially diagnosed today with aides, but have had more symptoms that they don't know about, but it seems like they are related. I am a 49 year old woman. It all started for me two and a half years ago when I woke up with extreme vertigo. I was diagnosed with a virus in my ears (and they think aides is a virus, so it could have attacked both my ear and my eye). The dizziness has gotten better but never went away. I have also had my level of anxiety go up, and although I used to be a stage performer, I had to give that up because the anxiety has become unbearable. No one has checked my reflexes, and I do not sweat excessively. I noticed one dilated pupil about 6 weeks ago, and about the same time had what felt like a skipping heartbeat. That happened for a couple of days last month and once this month. My eyes hurt, and I have vicious headaches, but those have been happening for awhile, sometimes they are migraines but lately just bad headaches that are increasing in frequency. They said my headaches, vertigo and heart skipping are not related, but after reading this, i think the experts don't know what they are talking about. Anyway, thanks again, this was a super helpful blog.
Sweetsusieg (author) from Michigan on November 01, 2011:
Honestly, that is the reason I don't have one. Because I am not positively certain. Since I have no reflexes my eyes will not dilate, therefore if I were to be unconscious it might appear that I was brain dead, which could delay any live saving techniques. I've thought about putting 'Aides Tonic pupil' but that's the only thing I can think of. I guess I should ask my eye Doctor!!
Lynn on November 01, 2011:
What information should be on a medical alert i.d. if you have Adies Tonic Pupils?
Sweetsusieg (author) from Michigan on October 21, 2011:
LOL - what a lovely way to look at it!!
Yes, I have had palpitations, I even wrote a Hub about it!! Since my heart got stuck on 'fast' and stayed that way for several hours. Ok, I admit it was darned scary!! Went to the ER and even did one of them paddle thingy's on me... That didn't work Here is the Hub - If you'd like to read it. https://hubpages.com/health/How-to-save-your-life-...
I think I finally figured out what causes the palpitations - My sinuses... yep, too much snot. Ok, now that's just too gross to talk about...
I can see us now in 'group' "Hi, My Name is Susie... I have Aides and it's been 3 weeks since I cut off an ear" LOL
I belong to an organization that requires me to speak to the group.... Yep, even though I have been the leader of this group at one time I still get very nervous. I most of the time look like Joe Cocker on crack... (I'm not sure of your age, but Joe is a singer who had really jerky movements but sings fantastic!!) Or maybe Don knotts - the Ghost and Mr. Chicken... Ok, maybe I'm exaggerating just a tad...
It's always good to keep a sense of humor when you have something that cannot be changed.
Definitely we need to keep in touch!! It's always good to hear of other experiences!
strevino14 on October 21, 2011:
The dizziness is crazy. Getting up too fast is the worst. I always get up/stand up too fast and always do that swirling thing and hold my head as if it were going to fall off and people think I'm fainting, but then it passes within seconds. The look I get is no fun. LOL.
As for what the dr's think: They have no idea whether or not it will migrate to my other eye. They said it could and both eyes be affected, or it would migrate and the original affected eye get better or that it could just go away all together. I just figured no one really knows!
And yes, the dizziness is absolutely related to the glasses. Well at least for me it was. Being that I only have it in one eye, wearing glasses was troublesome, since the affected eye does not like to focus. Once I started wearing only one contact in the good eye, the dizzy spells went away and I can actually read far and close. With glasses, I had to take them off in order to read close-up, like a menu, book, etc. Now with one contact, I'm good. It made a world of difference. My eye doc is a genius!! He also told me that if I were to ever get stopped by an officer and for some reason find out that I had only one contact, I don't know how they would, but if in case they did, just to let him know and he would clear it up for me. lol.
As for the size of my pupils, well, to start off with, my eyes are dark brown...I mean really, really dark brown, so you can barely see my pupil. I can see it in light, but not in the dark. But I do see how the pupil is so large it almost covers most of my eye, while my other one is a tiny little dot. It's pretty freaky, sometimes I wish I had light colored eyes so everyone could see and be able to show it off, because like you, I think it's pretty cool, since I know that it doesn't kill you. LOL I do know what you mean though, about how you can feel when it changes sizes. I always describe it as if someone is pulling my eye from behind, now thanks to you, I know what is actually happening when I feel that.=)
I've also noticed at times a rapid heart beat. It feels as if my heart is just going to pop out of my chest, then just as soon as it comes, it goes. Have you experienced this?
I, too, have noticed the uncontrollable nervousness. Especially when I am going to speak in front of people or do something that requires adrenaline to build up. I start shaking, first on the inside and if I let it, it will come outward. I have learned to control it though, by just breathing and calming my mind by seeing something soothing, such as hot chocolate, mountains, etc. Weird huh?
Weird thing though, I lead praise & worship at my church every Sunday (two services) and Wednesday. I get nervous every time, but have learned to calm myself down beforehand. Like you said, you just learn to live with it. Dr. told me that it is not something that will kill me, but that it is something that will most definitely annoy me, maybe for a lifetime. It's like a thorn on my side (as Paul said in the Bible). And that makes it okay.
"Hello, my name is S. Trevino and I have Adie's (Tonic Eye) Syndrome and I have been nervous-free for 6 seconds now"....and I'm getting better! LOL. Let's keep in touch, because only you and I and a few others know exactly how we feel. We are strange and weird, but that's okay, because we would be boring if we were perfect!
Sweetsusieg (author) from Michigan on October 20, 2011:
How cool!! Well the part about your vision getting better that is!! Mine started out good maybe that is what happened. The dizziness is something to behold isn't it? Since I'm blonde, folks just think it's natural...
Do they feel that it might pass on to the other eye? Or are they fairly certain that it will stay in one eye?
I am hoping that mine won't get any worse, the left seems to be much worse than the right. I wear bifocals for reading, I really don't want to go to trifocals!! I think the next time I go I'm going back to contacts. The dizziness seems to be related to the glasses. Well I didn't notice it as much with the contacts, maybe it's better put that way.
So do you notice the difference in your pupil sizes? I used to be able to feel it, but since mine no longer get big (dilate) I don't feel it any more. It was interesting to say the least!! Kind of like a muscle stretching on it's own...
Thanks so much for stopping by to tell me your story!! Very cool indeed!!
strevino14 on October 20, 2011:
I was diagnosed last year with Adie's Tonic Eye Syndrome. It is crazy how almost everything you spoke about in your original post is what I've been through, with the exception of me just having it in one eye only. I have no reflexes whatsoever. I sweat excessively when I exert myself. I get really dizzy when I stand or rise quickly. My left eye is extremely sensitive to light. My lid just automatically closes on its own when I walk into sunlight. I get dizzy spells and nausea due to feeling unbalanced.
The only thing that has happened to me that you did not mention is that my eyesight has improved significantly. I went from a 3.25 to a 2.0 in a span of about 6 years. I've had to get new glasses every year, sooner if my insurance allowed it.
I went to a neurologist about 7-8 years ago and she noticed I had no reflexes and was perplexed! She ordered all kinds of blood tests (I was left pretty much dry). All, but one came back normal....she said my testosterone level was rarely high for being a woman, but I didn't then, nor now have any unusual hair growth on my chin, lips, etc., don't have a low voice or anything else unusually manly. So that was weird. She did an MRI and found nothing. So she just left it at "unusually high testosterone level" and sent me to an endocronologist. He found the same thing and started me on some hormones that made my life miserable, so I stopped taking them.
A year and a half ago, I went to my normal "eye" check-up. I told him what I had been experiencing in detail. Much of what you've already mentioned. The "gray cloud" looming around, the feeling of being cross-eyed (like Ohmeohmy mentioned), etc. He freaked out! He jumped out of his seat and went over to his bookshelf and pulled out a huge medical book! Silence for about 5 minutes, then he jumped back up and came to me and said that he thought he knew what it was, but first he had to rule out other possible conditions. He said it could be one of three things: 1. A tumor in my lungs that sits right on one of the nerves that lead up to the brain that pertain to the left eye. (omg, scary) 2. A constricting brain tumor. (OOMMGG!! even scarier) and 3. Adie's Tonic Eye Syndrome.
He explained what Adie's was and said he felt that's what it was, but couldn't confirm it. He sent me to a world renown Neuro-Opthamologist, Dr.Tang in Houston, Tx. She works at the University of Houston. She ran so many tests, it was crazy! After being seen by about a million people, she came in the room, turned off the lights, came up to me with a little black thing in her hand, a lens of some sort, shined a spot light in my eye and quickly jumped back, turned on the lights and said to me, "You have the most beautiful Tonic Eye I have ever seen!!" I was confused! She then proceded to explain to me what it was all about. She then asked if her students could come in and take a look, so one at a time, they came and were all amazed. She said that they were all excited because being that it is very rare, this was a once in a million chance for her students to ever encounter a tonic eye case and be able to study it. They asked if they could take an extensive, close up photograph of my eye in order for the students to study.
I have just learned to cope with it. I have found that wearing only one contact in the normal eye helps quite a bit with the focus problems. When I was wearing glasses, I got dizzy and nauseated a lot. Now, wearing one contact helps a lot. Until I start feeling that my vision has changed, which I'm feeling now for the past few days. I'm fixing to go to my yearly check-up. More than likely he'll find that my vision has improved once again....we'll see. I'll keep ya posted.
Thanks for listening.
Sweetsusieg (author) from Michigan on October 05, 2011:
That seems to be part of the process, 1 big and 1 small. My pupils have locked down and don't open at all now. My step son is an eye Dr. and he couldn't wait to take a peek inside these baby blues. He added the drops to dilate my pupils, he was kind of surprised at not only how long it took, but when they were finally opened they didn't open very far.
My left eye now has double vision which is permanent from what I have able to find out so far. Well maybe double vision is too strong of a term. It's more like a double haze, but only in my left eye. I hope it does not migrate over to my right, but I am sure it will since it was my left eye that I first noticed the change many years ago.
Have you noticed the rest of your reflexes being effected yet? Maybe it's reacting differently because you're a guy? I'm not sure...
Thanks for stopping by!!