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| Wow Everyone! Today I just learned the NAME for this Ive had since birth!. At 2 1/2, I had eye surgery for "lazy eye",, my left one, and since then it never sees as well as the right. The right pupil has always been teeny tiny, and never dialates. The left one always a bit bigger, never dialates, nor shrinks. In grade school I was made to wear a patch all day, and routinely went for "eye exercises", mainly to strengthen the "bad eye". {im 48 now}. But heres the kicker. When I was 25 I met my birth mother, and she has the same thing! She was also Adopted at birth, but never met her natural parents. It seems I inherited it from her, and my half sister didn't, whom she kept, and was a year older than me. And my son, whose 10, has it too, same eyes as mine, only his arent as extreemly different in size. My small pupil is like a pinhead! We were just at the eye doctor for an exam for him, he wears glasses, and the docs had fun with that...no reaction either way to light and dark. This forum is the first Ive heard of people getting this out of the blue. Ive always been afraid to have those drops that force dialation, but today my son had them and it sure was a blast to see him with BIG pupils! I understand that its the BRAIN that "sees", actualy. I wonder if there might be some emotional reason that effects the nervous system and freezes the action up. One analyst told me it was "fear"... Then theres the alien thing...hmm!!! Now Ill go back to reading...this was the first site I looked at so far..... so, any "cure?" I wouldnt bother calling it a "disease" myself, but I dont know about those who have headaches and such. Anyone else inherited it? Thanks for posting! Stephanie |
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| I too have been diagnosed with adies pupil about a month ago. I also have three kids, one has autism/aspergers syndrome. I was told by the ophalmologist that it is related to having had glandular fever as a 17 year old and is damage to the nerve endings.This is why we also have no knee reflexes. Hope this helps | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Re:Adies Tonic Pupil (PREVIEW) Hi. I was diagnosed today with adies. I believe I have been dealing with this for some time, but was not paying attention. I was diagnosed with MS 5 yrs ago and believed this was just part of the MS symptoms. I do not really have a problem with light, I just have a real hard time reading. I am in school for my Masters and have a lot of reading. Thus I have been living with headaches like crazy. I am still uncertain as of what to expect and what I should and should not do. Any suggestions would be great. Many of the symptoms listed above are also symptoms of MS. Scary if you are dealing with both. A few suggestions and maybe some ideas on where I can get more information would be appreciated. Thanks |
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| i am 42 and have had adies pupils since i was 8 years old i wear sunglasses in rain hail and shine get headaches because of the sun i even swim with sun glasses on as i can not stand the glare of the sun or the water fred hollows looked after me back then and it took them years before they knew what i had there is no cure my eye sight is not to bad i do wear reading glasses but that could be my age i wish you luck this is not a life threatening disease and you can live with it | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi I have had Adies for two and half years, i have been in constant pain from the light ever since, i wear sunglasses and a cap and i have tried tinted contacts but nothing gets rid of the pain, i was wondering if anyone else as had pain for so long and then it eased off. The thought of having this for ever with no relieve is very depressing, the eye doctor said the pain should of settled by now but it hasn't, it makes me feel sick and ill. |
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| I was recntly diagnosed with it. Seemed to arrive all of a sudden. The specalist said it was late stage and therefore should have been noticable for a while, but given the disparity in pupil size it would have been noticed. It seemed to arrive after a very bad cold (man flu) and was accompanied by a headahe and pain in my left cheek. This has sub-sided now and I am left with pins and needles in the left-hand side of my face. An ENT sepecialist has send me for a CT scan to check out my sinuses. The only other issue is light sensitivity and a change of vision requiring new glasses. I became more short sided in both eyes. After two months, my large pupil eye needs a further new lens having become more short sighted. I wonder if the lens nerves have been damaged as well as those of the iris (rhetorical) The Eye specalist seemed unphased by the condition, "it happens accept it". No one seems to want to explain the impact of the loss of other relexes. I assume they were there for a reason? After the release of Revenge of the Sith my wife gave me a Jedi name Master 1 key I. Good luck and may the force be with you. |
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| I found this message board very interesting, as I was diagnosed with Adies almost 6 years ago (at age 27) in my left eye. Back then, there was NOTHING on the web about Adies and most doctors didn't know what it was or what caused it. My eye specialist always LOVES it when I go in for my check up. She is fascinated. Unfortunately, it does affect my vision in bright light. I must wear sunglasses outside in bright light or I just can't drive. I was told it could affect my right eye someday. When it first happened, it was all of a sudden and my pupil was enormous - you could hardly make out the color. After lots of specialist visits and an MRI there has been no improvement with the exception of the pupil adjusting to inside light and looking about the same size as my healthy eye. Most people can't tell unless I go outside. The other thing I've noticed is that when I'm really tired and my eyes hurt, the adies pupil starts to contract a little - I get really excited. But, it doesn't last. I wish there was more research on this syndrome - it is frustrating to live with something that is a bit of an unknown. I was also told that it wasn't heriditary, but my daughters pupils are not the same size either. However, hers seem to be working properly. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I was diagnosed with Adies Pupil one year ago at age 47 and have seen several doctors including a Neuro-Opthomologist. Then 3 months ago my other pupil became very small and is now slow to open. I was told that it was compensating somewhat for the Adies eye. What caught my attention was your comment about your son having Autism. My son has Down Syndrome and Autism. This is an interesting coincidence. Are there others of us out there I wonder? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have just (literally an hour ago) been told by my GP that I have got Adies Pupil. He is referring me to the opthamologist at my local hospital to check. It came on suddenly yesterday following a short headache and sensitivity to light and vertigo. At first I thought I was having a stroke as I also had pains in my left arm, but it apprears that was not related? I am 45 have 3 kids one of whom is Autistic/Asperger Syndrome and my youngest has global neurological impairment of unknown cause. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I was diagnosed with Adies Tonic Pupil Syndrome in the right eye 8 years ago, six months after my daughter was born. It was quite intense with CT scans, MRI, and everyone wanting to have a look. I was told that it would not go intp the other eye but 6 years later it affected my left eye the same way as the right. The onset was sudden, with some headaches and bursts of light. I have been affected in both eyes for the last 2 years, the pupils have evened out but are very slow to respond to light. I tried the drops but it felt better to use sunglasses and believe that the brain will try and compensate for the lack of instant response. Probably because I now had 2 small children and had less time to concentrate on me. I get headaches and reaccuring sinus infections but no other symptoms. In the beginning I was very nervous about the syndrome and wondered if it was a symptom of some other neralogical condition, and thus far it looks like just a case of bad spelling. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Would be interested to hear more reponses on this. I think i'll be heading to the doctor, seem to have difficulty focusing both eyes on the one spot. I may have uneven pupil dilation. Have had head injuries, and do get migraines. never heard of Adies tonic pupil, its good reading other peoples posts on this. |
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| also when I got dizzy, lightheaded and a headache, my pupil was really enlarged, it is still larger depending on what type of light I am in | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| In january I got dizzy,lightheaded and a bad headache.I made a Dr. appt. the Dr. called an ambulance to take me to the hospital for a ct scan could not do mri because of pacemaker ct was normal. The Dr. sent me to a neurologist and he has prescribed migraine medications because since this incident, I get headaches everyday. My regular Dr. sent me to a neuro-ophthamologist he says I have adies pupil. He prescribed me reading glasses which I am still waiting to get so I don't know if they help yet. I have to wear sun-glasses when I drive to work in the morning because the lights from other cars hurts my eye. The neurologist has now sent me to the physical therapist to check my neck out because the back and lower part of my head and neck hurts when I get my headaches. (I also had neck surgery 2 years ago for a herniated disc). | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I should also mention that my doctor said that it usually occurs more in women in their 20's and 30's. I am 39. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I was diagnosed with adies in 2/05. I was told it will never go away. Don't know much about it yet. A lot of headaches behind my adies eye and sensitivity to light. From what I have read on another message board, eye patches help, pilocarpine drops help and sunglasses. Haven't tried the patch or drops yet. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi I went to my doc after 3 days of my workmates telling me I looked like I was on drugs-was rushed to hospital -cat scans MRI lots of doctors looking at me-stroke? tumor?- and after two weeks of tests have been diagnosed with adies pupil syndrome. I would be interested in keeping in touch. Am of to the neurosurgeon 1 april 05 for "reassurance"; would love to hear of any other people with this condition. i think it makes us 'unique".by the way i am 35 and was told I am very young for this condition!! Understand the gaggles of student doctors- I had 8 in a 24 hour period----the tests became a little repetative!!!!!!!!! regards Jenny |
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| Hi, I have it! It appeared from no where about 10 years ago (i'm 32). I went to the doctor - he told me it was a neurological problem with no known long term affects. He perscribed me some eye drops to 'even up' my pupils, i used them once and found it uncomfortable so carried on regardless. I've had eye tests and hospital tests where gaggles of student doctors have tested my reflexes, shone lights into my eyes and generally been fascinated by the condition (apparantly it's rare). Originally my eyes looked like a penny farthing - one huge dilated pupil the other v small...lots of David Bowie comments. But now, 10 years on, they're pretty even...i notice it takes longer to adjust comin in and out of bright light..but my eyesight (touch wood) is unaffected....I hope my experience helps you in some way...theres quite a few articles about it on the web... best wishes, Emma |
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| I am wondering if anyone has this eye problem or knows something about it and it's long term effects.? Any insight would be great. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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