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  • aytonsenna12
    I have today been told that i have Holmes Adie Syndrome. I have an appointment with a specialist on Thursday at my local hospital. I am a bit freaked out about
    Message 1 of 7 , Jan 5, 2004
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      I have today been told that i have Holmes Adie Syndrome. I have an
      appointment with a specialist on Thursday at my local hospital.

      I am a bit freaked out about it, as I have never heard of this
      disease before today and have been told that there is no cure.

      Today was also my first day at work since I got the dilated pupil and
      blured vision, it was terriable as I input information from papers
      onto the computer, this gave me a head ache as I was straining my eye.

      I have a few questions: what causes it? will i need to change my job?
      will i still be alloud to drive? and can anyone recommend a good web
      site? as most seem to be very vague.

      I look forward to receiving any information or advice.


      Marie
    • MStafford
      Welcome Marie, This syndrome is rare. Doctors are not sure what causes it (virus, trauma, pecurser of another disease...). I already wear glasses so I m use to
      Message 2 of 7 , Jan 6, 2004
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        Welcome Marie,
        This syndrome is rare. Doctors are not sure what causes it (virus,
        trauma, pecurser of another disease...). I already wear glasses so I'm use
        to bad sight anyway. However, I still have to put my glasses of and on
        depending on what I'm doing (they even have a bifocal prescription). It'
        annoying but I couldn't deal with dilated pilocarpine drops which constrict
        the pupil and help with near focusing. You may find them helpful doing your
        computer work.
        It all depends how much your sight is effected. I was diagnoised in
        1992. Bothered by bright lights but can still drive. Eventually, you may be
        able to accomodate for the difference and over time the dilated pupil may
        get smaller. Not everyone has the same symptoms and they may be varied in
        degree also.
        Browse the archives for information links, soon, you'll know as much, if
        not more, than some doctors. Especially since you are experiencing this
        first hand.
        If noone has told you, your eye may not be the only thing involved. Some
        are bothered by headaches due to the vision strain, some have reflex
        problems (the most obvious, knee reflex). Others may have strange sweating
        patterns.
        Take one day at a time, explore and question.
        Good luck.
        mrs
      • lucy gleeson
        marie, don t worry, over time you will adjust to it. there s no explanation as yet to why it happens but if you can think back to anything in the past five
        Message 3 of 7 , Jan 7, 2004
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          marie,
          don't worry, over time you will adjust to it. there's no explanation as yet to why it happens but if you can think back to anything in the past five years or so that could've caused it, you're more likely to be correct than a doctor. try and do exercises by focusing on your finger for a minute or two a day as bob batey suggested and i reckon reflexology might help with the pain?
          good luck

          aytonsenna12 <aytonsenna12@...> wrote:
          I have today been told that i have Holmes Adie Syndrome. I have an
          appointment with a specialist on Thursday at my local hospital.

          I am a bit freaked out about it, as I have never heard of this
          disease before today and have been told that there is no cure.

          Today was also my first day at work since I got the dilated pupil and
          blured vision, it was terriable as I input information from papers
          onto the computer, this gave me a head ache as I was straining my eye.

          I have a few questions: what causes it? will i need to change my job?
          will i still be alloud to drive? and can anyone recommend a good web
          site? as most seem to be very vague.

          I look forward to receiving any information or advice.


          Marie






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        • rachelodenkirk
          Hi Marie, First off, I love your name! Caonsidered using it for my now 2 year old. Anyway, I also have just the dialated pupil with no focusing ability. I
          Message 4 of 7 , Jan 7, 2004
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            Hi Marie,
            First off, I love your name! Caonsidered using it for my now 2 year
            old.

            Anyway, I also have just the dialated pupil with no focusing
            ability. I too had pretty bad vision prior to getting Adies, only
            now my glasses/contacts for that eye don't work for near vision. To
            correct for that I got another pair of glasses with a corrected lens
            in that eye that allows be to see things at just the right distance,
            usually about book reading level. I only wear them to read books.
            Otherwise I wear my "regular" lenses that allow me to see everything
            far away as clear as before.

            Over time you will probably adjust to the vision change and it wont
            be so noticable. But maybe you should look into getting a pair of
            glasses to do your work?

            Driving shouldn't be a problem, I only have some slight problems now
            with night vision. Since the eye doesn't constrict to bright
            headlights coming at you, I have found that everything looks a
            little bit more gray and objects don't stand out so well. I just
            have to pay more attention than before.

            Your doctor my have you try the pilocarpine drops. I did, but
            because of my age, 33, my doctor said that the common problem
            younger people have is that they are too effective. My eye would
            over constrict for about an hour, during which time no pair of
            glasses would make it possible to see with that eye. And then after
            an hour things would sort of be "normal", like before the Adies.
            Then it would fade away and go back to just plain Adies eye in the
            third hour. Basically this was WAY too annoying to keep doing all
            day long, so I stopped taking them.

            As for headaches, mine went away after a few months. I guess my
            body just got used to the straining. But for a while I did have
            some killer migraines.

            You are right, most information on this is very vague. I had to go
            to 2 opthamologists to get a diagnosis. I suppose that due to the
            rarity of the condition(I hate to refer to what I have as a disease
            cause it is non progressive and is a result of a one time event,
            what ever that may be)no one is going to run out and do any research
            on it.

            So, greive for your "lost eye". Just remember that you do still
            have the vision, it is just now premantly compromised.....in an
            unfair way. :( I took me a good 3 months to come to terms with the
            way it looks and behaves. But NO ONE has ever noticed it(the
            dialted pupil).

            Good luck, and ask more questions if you need to.
            Rachel
            --- In adie_syndrome@yahoogroups.com, "aytonsenna12"
            <aytonsenna12@y...> wrote:
            > I have today been told that i have Holmes Adie Syndrome. I have an
            > appointment with a specialist on Thursday at my local hospital.
            >
            > I am a bit freaked out about it, as I have never heard of this
            > disease before today and have been told that there is no cure.
            >
            > Today was also my first day at work since I got the dilated pupil
            and
            > blured vision, it was terriable as I input information from papers
            > onto the computer, this gave me a head ache as I was straining my
            eye.
            >
            > I have a few questions: what causes it? will i need to change my
            job?
            > will i still be alloud to drive? and can anyone recommend a good
            web
            > site? as most seem to be very vague.
            >
            > I look forward to receiving any information or advice.
            >
            >
            > Marie
          • lucy gleeson
            i have noticed that in evening light my pupil goes to exactly the same size as the other (as in constricts) and although my reflexes are not good although
            Message 5 of 7 , Jan 8, 2004
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              i have noticed that in evening light my pupil  goes to exactly the same size as the other (as in constricts) and although my reflexes are not good although still present, my knee reflexes of it's own accord at times? just suddenly happens? my pupil constricts so quickly when i focus and i don't have any problems with it. i've had it about 16 months. is there anyone else in the same position as i do find it confusing, there really should be research on this more, can't believe there isn't, very odd!

              rachelodenkirk <rodenkirk@...> wrote:
              Hi Marie,
              First off, I love your name!  Caonsidered using it for my now 2 year
              old.

              Anyway, I also have just the dialated pupil with no focusing
              ability.  I too had pretty bad vision prior to getting Adies, only
              now my glasses/contacts for that eye don't work for near vision.  To
              correct for that I got another pair of glasses with a corrected lens
              in that eye that allows be to see things at just the right distance,
              usually about book reading level. I only wear them to read books. 
              Otherwise I wear my "regular" lenses that allow me to see everything
              far away as clear as before.

              Over time you will probably adjust to the vision change and it wont
              be so noticable.  But maybe you should look into getting a pair of
              glasses to do your work?

              Driving shouldn't be a problem, I only have some slight problems now
              with night vision.  Since the eye doesn't constrict to bright
              headlights coming at you, I have found that everything looks a
              little bit more gray and objects don't stand out so well.  I just
              have to pay more attention than before.

              Your doctor my have you try the pilocarpine drops.  I did, but
              because of my age, 33, my doctor said that the common problem
              younger people have is that they are too effective.  My eye would
              over constrict for about an hour, during which time no pair of
              glasses would make it possible to see with that eye.  And then after
              an hour things would sort of be "normal", like before the Adies. 
              Then it would fade away and go back to just plain Adies eye in the
              third hour.  Basically this was WAY too annoying to keep doing all
              day long, so I stopped taking them.

              As for headaches, mine went away after a few months.  I guess my
              body just got used to the straining.  But for a while I did have
              some killer migraines.

              You are right, most information on this is very vague.  I had to go
              to 2 opthamologists to get a diagnosis.  I suppose that due to the
              rarity of the condition(I hate to refer to what I have as a disease
              cause it is non progressive and is a result of a one time event,
              what ever that may be)no one is going to run out and do any research
              on it. 

              So, greive for your "lost eye".  Just remember that you do still
              have the vision, it is just now premantly compromised.....in an
              unfair way. :(  I took me a good 3 months to come to terms with the
              way it looks and behaves.  But NO ONE has ever noticed it(the
              dialted pupil).

              Good luck, and ask more questions if you need to.
              Rachel
              --- In adie_syndrome@yahoogroups.com, "aytonsenna12"
              <aytonsenna12@y...> wrote:
              > I have today been told that i have Holmes Adie Syndrome. I have an
              > appointment with a specialist on Thursday at my local hospital.
              >
              > I am a bit freaked out about it, as I have never heard of this
              > disease before today and have been told that there is no cure.
              >
              > Today was also my first day at work since I got the dilated pupil
              and
              > blured vision, it was terriable as I input information from papers
              > onto the computer, this gave me a head ache as I was straining my
              eye.
              >
              > I have a few questions: what causes it? will i need to change my
              job?
              > will i still be alloud to drive? and can anyone recommend a good
              web
              > site? as most seem to be very vague.
              >
              > I look forward to receiving any information or advice.
              >
              >
              > Marie



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            • Robert Batey
              Dear Lucy, Ihave the same strange thing in the evening but i think it is due to tiredness therfore relaxing of the muscles sometimes it hurts whrn it reduces
              Message 6 of 7 , Jan 8, 2004
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                Dear Lucy,
                Ihave the same strange thing in the evening but i think it is due to tiredness therfore relaxing of the muscles sometimes it hurts whrn it reduces in size my knee reflexes are sporadic too sometimes with a mind of their own , not much is known about this condition but i think it is mainly brought on by stress and in the evening when your relaxed it starts to try and go back to normal --thats my theory anyway , we all seem to have something in common and its not too hard to come to terms with after a while
                all the  best to everyone
                bob

                lucy gleeson <lucygleeson1uk@...> wrote:
                i have noticed that in evening light my pupil  goes to exactly the same size as the other (as in constricts) and although my reflexes are not good although still present, my knee reflexes of it's own accord at times? just suddenly happens? my pupil constricts so quickly when i focus and i don't have any problems with it. i've had it about 16 months. is there anyone else in the same position as i do find it confusing, there really should be research on this more, can't believe there isn't, very odd!

                rachelodenkirk <rodenkirk@...> wrote:
                Hi Marie,
                First off, I love your name!  Caonsidered using it for my now 2 year
                old.

                Anyway, I also have just the dialated pupil with no focusing
                ability.  I too had pretty bad vision prior to getting Adies, only
                now my glasses/contacts for that eye don't work for near vision.  To
                correct for that I got another pair of glasses with a corrected lens
                in that eye that allows be to see things at just the right distance,
                usually about book reading level. I only wear them to read books. 
                Otherwise I wear my "regular" lenses that allow me to see everything
                far away as clear as before.

                Over time you will probably adjust to the vision change and it wont
                be so noticable.  But maybe you should look into getting a pair of
                glasses to do your work?

                Driving shouldn't be a problem, I only have some slight problems now
                with night vision.  Since the eye doesn't constrict to bright
                headlights coming at you, I have found that everything looks a
                little bit more gray and objects don't stand out so well.  I just
                have to pay more attention than before.

                Your doctor my have you try the pilocarpine drops.  I did, but
                because of my age, 33, my doctor said that the common problem
                younger people have is that they are too effective.  My eye would
                over constrict for about an hour, during which time no pair of
                glasses would make it possible to see with that eye.  And then after
                an hour things would sort of be "normal", like before the Adies. 
                Then it would fade away and go back to just plain Adies eye in the
                third hour.  Basically this was WAY too annoying to keep doing all
                day long, so I stopped taking them.

                As for headaches, mine went away after a few months.  I guess my
                body just got used to the straining.  But for a while I did have
                some killer migraines.

                You are right, most information on this is very vague.  I had to go
                to 2 opthamologists to get a diagnosis.  I suppose that due to the
                rarity of the condition(I hate to refer to what I have as a disease
                cause it is non progressive and is a result of a one time event,
                what ever that may be)no one is going to run out and do any research
                on it. 

                So, greive for your "lost eye".  Just remember that you do still
                have the vision, it is just now premantly compromised.....in an
                unfair way. :(  I took me a good 3 months to come to terms with the
                way it looks and behaves.  But NO ONE has ever noticed it(the
                dialted pupil).

                Good luck, and ask more questions if you need to.
                Rachel
                --- In adie_syndrome@yahoogroups.com, "aytonsenna12"
                <aytonsenna12@y...> wrote:
                > I have today been told that i have Holmes Adie Syndrome. I have an
                > appointment with a specialist on Thursday at my local hospital.
                >
                > I am a bit freaked out about it, as I have never heard of this
                > disease before today and have been told that there is no cure.
                >
                > Today was also my first day at work since I got the dilated pupil
                and
                > blured vision, it was terriable as I input information from papers
                > onto the computer, this gave me a head ache as I was straining my
                eye.
                >
                > I have a few questions: what causes it? will i need to change my
                job?
                > will i still be alloud to drive? and can anyone recommend a good
                web
                > site? as most seem to be very vague.
                >
                > I look forward to receiving any information or advice.
                >
                >
                > Marie



                Yahoo! Groups Links


                Yahoo! Messenger - Communicate instantly..."Ping" your friends today! Download Messenger Now

                Yahoo! Groups Links


                Yahoo! Messenger - Communicate instantly..."Ping" your friends today! Download Messenger Now

              • MStafford
                Lucy, It s rare so, not enough people to make back research $. No people, no $, no research. And most drs. believe this syndrome is non-progressive. mrs
                Message 7 of 7 , Jan 8, 2004
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                  Lucy,
                      It's rare so, not enough people to make back research $.
                  No people, no $, no research. And most drs. believe this syndrome is non-progressive.
                  mrs
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