mountain girl Posted November 12, 2009 Report Share Posted November 12, 2009 I thought I read somewhere that 3 percent of pots pts. have adies pupil, but I do not see anyone on the website here mention it much. Does anyone else have it and what do you experience? I have it in my left eye so that pupil stays dialated and does not respond much if at all to light. I also notice my vision is worse in that eye. I have been to an eye dr. for diagnosis, but he acted like there was really nothing to do. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 13, 2009 Report Share Posted November 13, 2009 If by Adie's pupil you mean unequal pupils, I have had that at certain times. They usually even out eventually. I also have the weird reaction that if I have to have my eyes dilated, they stay that way for a long time. THREE DAYS last time. I looked like I was on drugs! My eye doc said he runs into people that happens to once in a while. Yeah, probably people with dysautonomia!Amy Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted November 13, 2009 Report Share Posted November 13, 2009 Okay, this is what I was told but don't panic until you talk to a doctor about it. I was diagnosed with Adies this last spring. I have an eye doctor that did a double residency in neurology. Every year, he said he needed to conduct a special occular neuro exam and every year it has been negative for any problems other than far sidedness. Well, this spring he said that that I had positive Adies in both eyes. He said that it manifests in one eye, and then will eventually manifest in the other eye. He said that it is due to Dyautonomia. He also said that those with Adies will eventually lose their deep tendon reflexes (the kick response when they hit you in the knee with the little hammer) and Adies is an indicator that there are lesions on the 7th or 8th cranial nerves. This all sounded pretty bad to me and I went back to work and bawled to my coworker surgical nurses. Here is why you shouldn't necessarily panic. My primary doctor consulted both the eye doctor, research, and a neurologist and this is what he said. Adies is a manifestation, but once it is there- it is there and its not going anywhere in either direction. It is permanent, but it does not get worse. There is no treatment because once you have it there is nothing to prevent because that is just it and it will not get worse. He said the most of Adies is that it is dang irritating and people just have to adapt to it- no one has ever lost their eyesight. Second thing. My deep tendon reflexes are now gone. He hits the hammer on my leg and nothing. I have not noticed a difference at all. I was afraid I would walk wierd or lose my ability to walk. No difference. No problems. Third thing. The cranial lesions result to nothing as well. At least so far, there has been nothing that has resulted from it and the doctors feel that except for Adies, we would have never known they were there. There is an article that talks a little (not much though) about Adies and dysautonomia that Dr. Low from Mayo participated in. You can access it on pubmed.com. Apparently they felt that those with Adies has a particular type of dysautonomia that is advanced. So, we're the over achievers of dysautonomia- nice! They suggested a medication for it, but it has been 8 years since the article and my MD did a reference search on it. He said that he was not comfortable trying the med because there was no followup to the article and he felt the med must have failed to produce a result and may have actually been found to be harmful. So, that is all I know. About the same time I was also diagnosed with hydrops of the ear which is like Adies, only in the ear. Have you been experiencing hearing loss?I hope this helps. Kits Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 13, 2009 Report Share Posted November 13, 2009 I don't have Adies Pupil, but I do get nystagmus. Anyone else? That's where your iris moves very quickly back and forth horizontally. Very weird sensation. Quote Link to comment Share on other sites More sharing options...
erik Posted November 13, 2009 Report Share Posted November 13, 2009 I've had eye jitters after reading fatigue. Vibrating left/right. But it's not frequent for me so I figure it's not a generalized nystagmus.I haven't noticed a discrepancy between pupil sizes. When I worked at a school, sometimes the students would appear to be getting disproportionately larger over time... that's probably just normal growth spurts or whatever Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 14, 2009 Report Share Posted November 14, 2009 Every time I get a bad boute of POTS I get eye lid lag on one side and then I get that pupil thing for three or four days. Ive told my doctor but he refuses to accept that it has anything to do with POTS. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted November 18, 2009 Author Report Share Posted November 18, 2009 Thanks for all the info. It is a bit discouraging to know that it is permanent. It is reassuring to know it will not make my eyesight any worse. My eye is sensitive to light because of it staying dilated all the time. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 19, 2009 Report Share Posted November 19, 2009 Is it permanent? Perhaps Adies is, but I get an identical presentation that lasts four days tops. I believe I read that it is a sign of parasympathetic issues which are also implicated in some forms of POTS. Quote Link to comment Share on other sites More sharing options...
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