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| The previous message was for rebeccamholden! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My neuro opthamologist just told me he thinks I have Adie's pupil. They are scheduling the orbital mri and I will have the drop test nov 10. I have been going to different dr.s for months because of the pain and the two times I got iritis. My gp noticed the slight difference in my pupils. My neuro guy and eveything I read says virually no pain. The pain you describe is exactly what I have been feeling. I thought I was having sinus problems, then they thought migraine, but it is at the point that it doesn't go away. Any update on your condition since it has been awhile since you wrote this? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi everyone, I was diagnosed with Adie's Tonic last year in Sep/Oct. That time, I was unable to focus while switching my vision from far to near or vice versa. But the sensitivity to light was very much fine. But, now, lately before 2-3 months my eyes have stopped responding to light. I consulted the drs, one of them made a very VALID point which makes sense though, He sugested me a treatement although the dr along with him, who was having a look at my problem, adviced me taht at present you dont need any treatement. He said that you are facing this problem due to denervation hypersensitivity of ciliary ganglion i.e. the nerves in ciliary ganglion are degenerating. He said that, REGENERATION of these nerves is possible but in some cases it is very very very slow and in some cases its very spontaneous. The medicine which they prescribed me was pilocarp drops ( 5 c.c. 2% diluted in Natural Tears ) The other dr who was with him, suggested me that I can get custom made contact lenses with a fixed APPERTURE. What that will do? That will allow only a certain ammount of light to pass and hence, will help you in coping up with your issue. I hope it works out or drs come up with some treatement. The main issue with all of us is that, this problem is very rare and the drs all around the world arent working much on this problem, otherwise its not that tough to find out a treatement of this disorder. Anyways, I pray to God, that 1 day, we will be able to see and enjoy the sunshine again like all the other normal people. Every night I sleep hoping that the next morning I get up, I am normal.... I am 18 an year old guy, and I am going through all this stuff along with the rest of ma issues, I hope God has kept sumthing gud.. and better for me in the future. B.O.L. to all you people over there :) |
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| thank you for your insight on this problem i amnewly diagnosed and neverheard of this i am female 41 eye dr thingks eitherhead aches or stress caused it i did take on a different positiion at work which caused a little stess inthe beginning but now it k i do keepmy stress level down and you put my mind at ease thAT it is nothing serious i am scheduled for a mri soon | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hiei was just recently diagnosed with tonic pupil on 1-17-09 and willhave a mri done on 4-9-09 for my piece of mine i sometimes feel pressure on the temple of my tonic pupil and to have some pain in my eye i know where sun glasses outside allthe time and have non prescription glasses with a filtered lense so i can work in my office which very bright i too dont know how i got this i am female and 41 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Concerning Tonic Pupil, to all: I was diagnosed with tonic pupil, or sometimes aidies pupil (I don't think a diagnostic distinction is often made) several months ago. For those concerned about the strength of pilocarpine, I have a reccomendation: Dilute it with saline solution. I have a 2 percent pilocarpine solution (some people use a one percent solution) which I add saline solution to. If your dialated pupil is large this is particularly helpful because a diluted ratio can decrease the size without retracting your pupil all the way down. I dilute my 2 percent pilocarpine at a 15:1 ratio--15 drops (or any other measure) saline to 1 drop pilocarpine. I've also used 10,12,and 20 to 1 ratios depending on the situation. You will have to experiment yourself with what ratios are good for what situations--you can even moniter the size of your healthy pupil in common locations and calibrate the ratio to acheive a size closer to your healthy pupil. This is hard to do, because the pilocarpine wears off and a drop taken when you tonic pupil is at an intermediate size will have a different effect. I suggest carrying two differnt ratios--I carry a 15:1 and a 20:1. My tonic pupil is rarely the same size of my healty pupil, but I'm getting better at monitering it, and the differnece in my pupil sizes is usually not as noticable now. Now, if you ask you doc about this, he/she will probably say that a pharmacy must make the sulution in a sterile situation. This would be inpracticle considering the amount of experimentation that must be done and the cost of one mix--about 80 bones. I've been mixing the solution myself with sterile dropper bottles which you can get at some pharmacies--DO NOT USE A RANDOM DROPER BOTTLE--buy sterile ones, they are cheap. Just be extra careful and make sure all surfaces and ares are clean. Do not use any alcohol. All ingredients are sterile, so there is little danger. Ask a professional doc or pharmacist if you are concerned about steriliy ... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| With her recent head injury, it may stem from that, so definitely get her checked..You being curious to further it on the basis of it could be something more serious was a good call also.that's how I finally was diagnosed, I noticed it around March 2008, finally going to the doctor, by demand of peace of mind by my family.... they're first question was tumor, second was cancer....my diagnosis Adies Tonic Pupil. My name is Lea, a 36 year old mother of 3. Recently went back to school, and deals with the drip my eye puts me through!!1Knowing that it's nothing more serious, I'll live with "My Crazy Eye" | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi everyone, thought id introduce myself to the 1 in a million club. Woke up 12 weeks ago and noticed my dilated pupil straigt away as I have bright blue eyes and its really noticable. Just been to the eye hospital for the first time and they reckon its a tonic pupil. The guys here are even rarer than the ladies apparently. Totally asymptomatic and never had any probs with my eyes before. As a normal non drug using individual it all seems a bit strange at the mo. No apparent associated problems either. Got to go back to hospital Fri for a full evaluation and just seems comforting im not on my own with this little problem. Good to read everyones experiences, looks like something I'll have to deal with. Will continue to post with any updates. Even though I am a Pom - This is an Aussie site, Yes? Phil |
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| I have had adies pupil in my left eye for 17 years. I think your eye pain - tingling skin and so on comes from the extra light that comes in because of the pupil size. I had the same thing. Don't make a big deal out of it. Over time it will get smaller and you will learn to adjust. Even now I sometimes find that I have the effected eye only partially open due to the sun. I also have lost my deep tendon reflexes in my knees and feet. By the way knowing this will help your doctor in evaluating other conditions you may have as you get older. Most doctors have zero experience with this condition. |
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| Ferris, I read your blog and wanted to know if the continued nutritional support of beta caratenes and omega3-6-9s were effective in the regeneration of the ciliary nerve. I was told there is absolutely no treatment. In addition it appears that no two cases are exactly the same. I have recently been diagnosed, but not totally convinced an accurate dx was made. |
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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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