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| I have been recently diagnosed with aides tonic pupil by a neuro opthamologist. I was told this is a rather benign process. I have blurred vision in the affected eye that comes and goes. I also experience pain behind my eye and around my eyebrow intermittently. In addition, I sometimes have a tingling sensation below my eye and then my skin in that area fills tight and thick. Lastly, I have eyebrow pain at times. I still see 20/20 with corrective lenses,(I have worn glasses for years). Do any of you experience these same symtoms. My doctor said there is usually no pain or discomfort associated with aides tonic pupil. An MRI, although not totally normal did not reaveal any lesion. I have not had any injury, nor do I recall any virus or exposure to any kind that would have triggered this. All responses greatly appreciated. I am a bit frustrated as I am concerned I have been mis-diagnosed and the symtoms are troublesome. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My daughter came home from basketball practice last week (she's 14), and her left pupil was huge. It went down slowly, but she said it happened again the next day at practice - maybe not quite to that extent, but definitely much larger. Since then I've looked at pictures going back 1 1/2 years, and it seems that when she's inside, her left pupil is always larger - though not to the extent it was at basketball. I took her to an opthamologist today, who had no clue what was going on. I mentioned adies tonic pupil, but she said that her eye did respond to the direct light. It seems slower though when a light isn't shined directly into it. She said the optic nerve looked okay (not compressed like it would be if something was going on in the brain) But, she has no idea what it could be. She has no other symptoms - no pain or blurry vision. I'm thinking of taking her to a neurological opthamologist. What do you think? Could this be something really serious? The difference in pupils has been there obviously for over a year and 1/2, but the extreme reaction this week scares me a bit. She did hit her head in basketball a week before that, but not seriously....... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I was about 40 when I was diagnosed with Aides. It was friend who noticed my enlarged pupil in my left eye. I went to my OPT and she sent me to an Optamologist who had never seen this before. I, too am very light sensitive, but over the years the pupil is getting smaller. I was told that it would eventually be very small. I asked about Lasik and was told that I could not have it because of the Aides. Now - my son has developed the same problem. I didn't think that it could happen twice in the same family. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, I was diagnosed with Adies at age 20, now 34. My specialist said it would go away in 18mths, but it didn't. 6 years ago I started sweating alot and suffered migraines. I made no connection until 2 days ago when I did a search for adies, and it seems I have Ross' syndrome, which also involves loss of reflexes. As a younger person I struggled alot in social situations and meeting new people (guys), always wondering if they had noticed. I am used to it now, but I hate having photo's taken. My eyes are blue so it is very noticeable.It is frustrating, but there are worse conditions to have. I find that once people know what it is, they don't seem to worry. As for kids, they will always ask straight out "whats wrong with your eye?" you can have a bit of fun with that one!!! |
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| Hi all, I promised to put up a note once I'd had my new glasses for a while. Wanted to see if they helped me focus for close up, reading, screens etc. And I have to say they work a treat! Its a little odd wearing glasses (never had to before) and obviously the left lens (my dilated pupil) is a little thicker than the right one, but not so anyone would notice. I'm just so pleased to be able to read again without all the blurriness I had before. So, FWIW from my experience, glasses do help with the close up vision. Of coure I still have a funny looking pupil, but its surprising how few people notice it. I have some Pilocarpine drops in reserve in case I'm going somewhere very bright, or I guess if I had a job interview or something and didnt want to scare everyone straight away, although have used these very rarely, and never for just appearances. I see a lot of sad and devastated emails going up on this forum from people who have just been diagnosed and think it will ruin their life. I felt similar when I picked this up 6 months ago, but beleive me, you get used to it. In fact in most social and work situations these days I completely forget about it, and its very rarely anyone notices. If they do its an interesting story to tell! Kevin |
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| Hi Dayna, From what I have read the pupil restricts slowly with age. No exact time frames but it sounds like a slow process that comes with advanced age. Did the doctor comment on your fireworks at bedtime? I sometimes see glowing upon waking, that can go away quickly or last until I leave the dark room. The glowing can be colorful or white. It's as if what was glowing in my room was made of gems or light itself, kinda cool actually. Even though my pupils are drastically different sizes, people don't seem to notice until I mention it for some reason. I have not been too self conscious about it, but sometimes I prefer just wearing a light tinted glasses anyway, even if I'm inside. I guess I'm still getting used to it. I have asked about if anyone else had a previous issue with a lazy eye, as my right eye was a lazy eye long before the tonic pupil. Now I'm going to ask too, if anyone was on L-Tryptophan during the transition to tonic pupil. I started taking it to help me sleep a few months back, at the advent and on the night of the onset. I just had a bad reaction to L-Tryptophan with muscle weakness and tingling in my hands. Therefore I shan't take it again, and am even pondering if it had anything to do with the onset of tonic pupil. As for being a freak, I was a freak and different before tonic pupil, so it's icing on the cake for me. Being a freak makes you stronger. Society has ridged expectations, you don't need to accommodate them all. Take Care Everyone!!!! Tony |
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| I was just diagnosed yesterday and I don't have advice for you but thank you for posting this, even though it was probably difficult. I feel like a freak also and have been so depressed thinking about pictures in the future and putting on makeup just to have scary eyes. I hear you. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| 3 months ago I was diagnosed with Holmes Adies after my right eye dilated and stoped reactiving to light. It has slowly started constricting but my vision didn't change. But only this month my left eye dilated, stopped reacting to light and is now unable to focus at close range, all overnight (I remember seeing fireworks when I closed my eye at bed time) So now I have uneven vision from one eye to the other, This has given me even more headaches than before. The specialist said that he expects both pupils to constrict and stay that way. I used Pilocarpine as he said that this will help my eye focus(which it did) but because my left eye hadn't moved in 3 weeks the pain was intense. I'll keep using the drops to force my eye muscle to move as I don't want to lose the possibility of it reacting to light or focusing by it's self. I still have uneven sized pupils and was wondering how long they take to constrict, I've noticed a difference in the size of the first eye already. I don't want to try and get glasses if eveything keeps changing quickly, but I may have to just to be able to work. Has anyone else had eyes that have reacted differently to this condition? |
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| My daughter has been diagnosed with Tonic Pupil. They have not used the term Adies. They said she is the youngest to be diagnosed as we can see it in her photographs at 2 months of age. She is now 5 years old and we are getting ready for more testing including an MRI under sedation. I am scared that she is used to all of the pain and discomfort all of you are talking about and doesn't know how to tell me how she really feels. Is there anything I can do to help her handle this better and to help her deal with the day to day more comfortably? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Kevin, I was hoping yours would of went away, but mine hasn't either and I'm coming up on two months now. Good luck with the new glasses, please keep me posted on how that works out for you. My eyesight seems to be the same, as I said my right eye was diagnosed as a lazy eye when I was a kid in the 70s. Like the tonic pupil, lazy eyes are not well understood other than an otherwise perfect eye has difficulty seeing possibly because of a neuro issue or the brain. I would like to hear from anyone who also has this relationship. The differences in my sight is now I am more sensitive to light. The big pupil can be washed out by bright light for minutes after. I've come into a dark room there-after, and it's like almost being blind. It takes longer to re-adjust to the darkness than the smaller pupil. In a dark room or in the car at night my pupils may be the same size, but by and large the left pupil is smaller than normal, or at least I would think. I've noticed a clarity or depth of field in moderately lit rooms or outside even, that I didn't have before. It's really kind of cool, things stand out more somehow, the colors may be more defined; it's hard to explain. To protect the more open eye, I don't go outside in the sun without sunglasses anymore. If even I'm inside, I wear a light shaded sunglasses during the day. This I've found takes all the strain off my eyes because of the light. I've loaded up on sunglasses and extras in my house by the door, and both my cars. I may eventually go back to the eye doctor for a prescription pair of glasses. I would get those lightly tinted as well. I'm going to hold off until I read more from you Kevin, in case they work out good for you and I can go to my eye doctor with some ideas yours had. I noticed this after a night of drinking last year, but it went away in one day. I honestly don't think it's going away this time, and I was probably predisposed to the problem, even if the party didn't help. Ta ... |
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| Hi Denise, No, nothing to do with drops. I do have some but have only ever used them once when skiing in really bright conditions. Apparently the pupil isn't static, it still reacts to light, just really slowly, and not as much as the fully functioning one. When I had the eye test and tried on all the different lense variations, we did finally arrive at a prescription that seemed to improve my close up vision. So I'm hoping that the glasses will work or help at least a little. Your contacts sound interesting. I'd be interested to understand just how they block the light coming in to the eye. Let us know how you get on once you've got them, and I'll do the same about the glasses! |
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| Hi kevin Just read your post re your eye pupil changing throughout the day. Is your pupil not the same size all the time, or is it because your using pilocarpine ? I dont think they can regulate the vision for when the pupil is large with glasses. They can with contact lenses a bit better so i believe, I having 1 made up this week, apparantly it will block the light coming into the eye, I will re post after I get it to give my opinion on it. |
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| Thanks for the message Tony, funny that yours also appeared after a party. They say that the cause of this is unknown and 'possibly' a virus, so I wouldnt be surprised if the trauma of a night on the binge was enough to blow some or other fuse in your head. Anyway, mine at least seems to be here to stay. For me the vision has been becoming a real pain. Just really blurry, especially for close up, reading, computer screens etc. So much so that I did end up taking that trip to the optician. I expected him to have never heard of Adies and not know what to do, but he seemed to know what it was about. After about an hour of testing different lense combinations (is that usual?) we finally arrived at a prescription that actually seems to make my vision better. It will take a couple of weeks for the glasses to be ready. They are costing a fortune, but more than that I just hope that they actually help as this blurred eye is really frustrating. I guess my worry is that if the blurriness is caused by the dilated pupil, then when my pupil size changes, as it does slowly throughout the day, then will the presciption change and so my glasses go off? Who knows!! I'll post up again when I've had them for a few days so hopefully others with this predicament can have some more clues. Best of luck everyone - remember, along with David Bowie and (er, thats all I could find) you're one in a million! Kevin |
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| Hi All Was told mine was an Adies pupil but mine came after using dilating drops when received uveitis diagnosis, my eye never recovered after these drops so I think it hapened because of the toxic shock with the drops and trauma, I was also using steroids. Can anyone advise me if they know of any other drops than pilocarpine to shrink the pupil, I really cant stand the sight of my enlarged pupil. Has anyone changed the colour of their eyes with tinted lenses to mask the Adies eye ? Maybe this would be an idea. They also do painted iris eyes. Ive just found out about this and they paint a contact lense to match the good eye, its good for blocking the light also, anyone had any good experience with this ? alsois there any operations of any sort to cure this ? I really cant live with it. xx |
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| Hi everyone, I was diagnosed a couple of months ago. I was told mine was from Shingles on the nerves of my eye and also still being treated for a virus on the lense of my eye. I don't have the problem of anyone noticing my eye because my eyes are very dark to begin with. I was wondering if any of the ladies here have trouble trying to wear eye makeup? I'm not a heavy user but did wear some until now. I trie to wear it one day to work and felt like I had a pencil stuck in my eye all day! I would love to hear from anyone! |
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| Hi there. I am intereste to know are your pupils ok now ? Have you not got Adies pupil, was it something different as the drps you tried, I would be interested too in trying some ? I have just been diagnosed with adies and it has totally devastated me. Im using pilocarpine but they shrink the pupil too much and it takes hours and hours to get the corretc look. |
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| Hi valery I have just been diagnosed with this also. Its the confidence thing, Its shattered me completely. My eyes look so odd, one is massive and the other is normal. I went for a meal yesterday and my stepdaughter and her friend were looking at the eye and laughing at each other. I totally freaked out. How do you managae with it ? Have you had the pilocarpine drops as I have been trying. Its just hard to regulate it though as it sends my pupil to pinpoint and then I end up looking as silly as the good eye dilates to over compensate for the pinpoint eye. I have never been so self conscious in all my life, if you learn anything more let me know. My eye is also de sensitised which really scares me as I can no longer feel a contcat lense in my eye so I darent wear it. My episode followed a red eye after having steroid drops and dilating drops. I am sure that all the drops did the damage to me. Not that they will admit it though ! Your not alone x |
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| Hi Kevin, how have you been doing with yours since posting the message? Mine started after a party as well, I was really drunk the night before, came home and took maybe 10 aspirin as a hangover headache was coming on good. I woke up the next morning and there it was. Truth be told a few years ago after a party I noticed it, but I went back to bed and it went away by the time I woke up. Now it's been two weeks. I saw an eye doctor who said it was a benign neural anomaly because I was lacking in any other symptoms of a brain tumor or MS. I'm just at that point where I'm wondering if I have to live with it or will it go away. I had a lazy eye in my right eye (the large one) anyway, so my sight was never really good in it, but the left one has always been gangbusters and compensated nicely to the point where I never needed glasses since my lazy eye glasses 30 years ago. By coincidence I'm also male and 41. If you want email me at palosheights at hotmail dot com. Take Care, Tony |
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| Hi all, I have adies pupil for about four years. I have had numerous eye tests, scans etc and was told it was nothing too serious . However my problem is my self confidence.I have become so self aware of this and like others have said on the post, I notice that people look at my eys in wonder. I have also noticed that I find it very hard to make eye contact with people in fear of being 'noticed'. My doctors have never suggested drops to even my pupils out, I have one huge right pupil, my left pupil is tiny. I am a teacher and the children always seem to notice this, I get really worried about being accused of taking drugs etc. I also have some interviews coming up, and I am so worried about making eye conctact. I shy away when people look at me, something I never did before or something that I never even thought about before, doctors have said to me to take no notice and that I pay too much attention to it but I find it hard to forget about my eyes when people always look at me funny, any advice ??? |
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| I was only diagnosed with Adies 3 months ago and have only used the pilocarpine drops twice. They are used to constrict the pupil and are supposed to reduce the sensitivity to light, I live in the tropics and thought it would be great when I spent the day outside but the light still seemed as bright even though my pupils were the size on pinheads, good sunnies would work better. The main side effect I had was the inability to focus,not good when your on the back of a motorbike. My main problems have been the reaction of people when I'm in bright light and the difference in pupil size is obvious, my eye getting tired after spending the day in an office environment with computer screens and bright lights, and sometime shooting pain in and around my eye. Guess I'll just buy good sunglasses, turn the lights down and live with it. |
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| Can anyone tell me what pilocarpine drops are for? I was only given drops to shrink my pupil. I have had Adies for 2 months now. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, I just stumbled across this website by accident while reading up on cataracts. I was diagnosed about 25 years ago with what was called 'Holmes Aides Myotonic Syndrome' so I'm guesssing it's the same thing! On the whole I'm pretty unaffected by it - I wear sunglasses most of the time when I'm outside (no big deal) and I squint a lot, so I've got more wrinkles on one side of my face than the other! I do get pain behind my eyes and across my brow - especially when straining to see. I have virtually no reflexes anywhere but again don't feel this important but is a good talking point. When I was diagnosed I was told that it is just an anomaly but would be permanent - I suppose I just liked the uniqueness of it as most people (including opticians) had never seen it before. I do find that my eyesight is very variable and I do get a bit cheesed of with wearing glasses but I expect most people do. Initially I had a very large left pupil and very small right pupil; the difference is not always as obvious these days but I have pinprick pupils a lot of the time. To get to the point, I had a routine eye test last week and was told I have 'significant' cataracts that can't be helped with a stronger lens prescription and surgery has been recommended. I am currently waiting to see my GP (2 week waiting list!) to be refered to a specialist but I am totally shocked and doubting the diagnosis, because I am only 48. Has anyone else come across this and do you know if cataracts are common at my age with Holmes Aides? Sorry if that was long and boring - will try to keep it brief next time! JL PS One thing I have noticed over the years is that if I eat anything that I have a sensitivity to, the pupil is bigger and my vision much worse - I have been told by those 'in the know' that this is coincidence but I disagree as it always happens. |
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| i am on here for a different reason but noticed what your message said. In Sept. 99 the New England Journal of Med said that 99% of all chronic sinus-itis is fungal. An antibiotic is a fungal metabolite (fungal poison). I woul dstop the antibiotic routine (unless VERy necessary) and "re-hab" your system. Dr. Ohira's probiotics etc. Go to Know the Cause dot com. Have ot have an open mind but very informative!! Just thught I would leave that for you, good luck with everything! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, you know I've been looking for an online discussion group on Adies since I first developed this at Christmas (2007). I'm 41, male, and magically developed this the morning after my office Christmas party. Most resources suggest that this is viral, although the fact that I was really very drunk the night before seems a bit of a coincidence? I don't know. For me I have one large (left) pupil, and the other is supposedly normal. I was very self conscious about it to start with, but like other postings here have learned to get used to it quite quickly. Its funny to see people's eyes flitting from your left to your right to try and work out what it is that's not quite right! Where I would really appreciate any comments from the experience of the group here, is that I am finding it a real pain to read. At pretty much any time of day, although particularly difficult in bright light and reading your normal black print on white paper. My left eye is so blurry that I end up covering it up half the time. When all this first appeared the eye specialists told me it would calm down and my right (good) eye would learn to become the dominant one. If anything in the 3 months I've had this now it has got worse. I was also told that glasses wouldn't help as the blurriness is not down to lack of focus, but due to the excess of light coming in. But then I have seen some recent articles mentioning that some Adies sufferers are prescribed a change in their eye glasses to compensate. Does anyone have any views or experience of using reading glasses to correct the blurriness of the wonky eye? I've never needed glasses before (always had perfect vision - ah well!) so don't really know much about it all. Are there specialist opticians or would just a decent high street one be just as good? Any guidance appreciated. Many thanks. Kevin |
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