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Re: [adie_syndrome] Re: positive!

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  • lucy gleeson
    hi there... i know how you feel as i have pain and blurry vision and often think people are staring at me. strangely enough, i met someone last night who
    Message 1 of 13 , Jul 1, 2003
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      hi there... i know how you feel as i have pain and blurry vision and often think people are staring at me. strangely enough, i met someone last night who seemed to have the same thing but i didn' want to ask her incase she didn't like talking about it. i wear just coloured contacts as my eyes are light grey and so very obvious. yes, i do feel the pupil will constrict in time and i dont think doctors really know what they're talking about half the time! seeing a healer is helping me to keep calm about it and think positive which is the best way forward i think. good luck.x

      michaela_rees <michaela_rees@...> wrote:
      --- Dear Lucy
      I have had aides pupil now for five months and i worry what people
      will think of me because it does look odd, and i never see any other
      person with, it feels so strange you feel like your the only one.
      my bad bad pupil is much larger than the normal one and very blurry,
      i have eye pain and headaches much of the time which gets me down
      alot, i can't cope with the sunny days, i have to wear sunglasses and
      a cap all the time when i go out, it doesn't seem to be easing at the
      momment, i hope that it will ease in time.
      Do you think the pupil will get smaller in time or does it stay the
      same and has the symptoms regarding pain and blurryness ease at all
      in time.
      what contact lences do you have, i have to have a presciption lences.
      Michaela




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      Lucy G xx


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    • michaela_rees
      Hi lucy I have just got back from seeing a eye doctor, it was a long journey it is was 200 miles round journey, it was very stressfull. The doctor does not
      Message 2 of 13 , Jul 3, 2003
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        Hi lucy
        I have just got back from seeing a eye doctor, it was a long journey
        it is was 200 miles round journey, it was very stressfull.
        The doctor does not know why i am in so much pain, he hasn't seen
        others with this sort of on going pain before he see about 12 people
        a year with aidies pupil.
        Is your pain in your eye and forehead and cheek, and do you get it
        all the time and how long have you had aidies pupil.
        I feel very alone with this, i think now the pupil is the least of my
        worry's i just getting so down because of the constant pain and not
        noing why i am getting them and if i am going to have them for ever.
        Michaela
      • lucy gleeson
        hi michaela, i m sorry to hear of your pain. yes, i have pain in my cheek but its more of a feeling of numbness and sometimes throbbing. my doctors also are
        Message 3 of 13 , Jul 6, 2003
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          hi michaela,
          i'm sorry to hear of your pain. yes, i have pain in my cheek but its more of a feeling of numbness and sometimes throbbing. my doctors also are not sure why so i'm having an mri scan soon. i think maybe everyone is different. it is so frustrating, i know. some days i feel okay and others i feel really annoyed with it! i phoned morefields eye hospital and i was told in time the pupil will constrict but that i'll always have the condition? maybe i'm vain but the thought of having a dilated pupil forever is the worst as it makes me feel a bit ugly! i've had it 9 months and i feel it came on slowly before that as my eyes went blurry about a year ago. i really think that you should try and keep your chin up if you can and have lots of positive thoughts... i'm trying that although today it's getting to me a bit! i wonder whether it's caused by stress, as last year was very stressful for me but i did have sinus op aswell. have you suffered either of these? good luck and demand that doctors take you seriously. lucy

          michaela_rees <michaela_rees@...> wrote:
          Hi lucy
          I have just got back from seeing a eye doctor, it was a long journey
          it is was 200 miles round journey, it was very stressfull.
          The doctor does not know why i am in so much pain, he hasn't seen
          others with this sort of on going pain before he see about 12 people
          a year with aidies pupil.
          Is your pain in your eye and forehead and cheek, and do you get it
          all the time and how long have you had aidies pupil.
          I feel very alone with this, i think now the pupil is the least of my
          worry's i just getting so down because of the constant pain and not
          noing why i am getting them and if i am going to have them for ever.
          Michaela




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          Lucy G xx


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        • Robert Batey
          Lucy, The pain and numbness that you describe is generally associated with damage to the knerves in the face , this can be as a result of a damaged cheekbone
          Message 4 of 13 , Jul 7, 2003
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            Lucy,
            The pain and numbness that you describe is generally associated with damage to the knerves in the face , this can be as a result of a damaged cheekbone which in turn damages the nerve ,
            The after effect of this is numbness to the affected side of the face also in the teeth on the same side.
            This feels like spiders webb on your face and can be very annoying
            after time this is supposed to go away but i have had the condition for 20 years and my face is still numb .
            It may be that your sinus problem has affected this nerve causing the numbness that you desceibe
             
            Regards
            Bob Batey

            lucy gleeson <lucygleeson1uk@...> wrote:
            hi michaela,
            i'm sorry to hear of your pain. yes, i have pain in my cheek but its more of a feeling of numbness and sometimes throbbing. my doctors also are not sure why so i'm having an mri scan soon. i think maybe everyone is different. it is so frustrating, i know. some days i feel okay and others i feel really annoyed with it! i phoned morefields eye hospital and i was told in time the pupil will constrict but that i'll always have the condition? maybe i'm vain but the thought of having a dilated pupil forever is the worst as it makes me feel a bit ugly! i've had it 9 months and i feel it came on slowly before that as my eyes went blurry about a year ago. i really think that you should try and keep your chin up if you can and have lots of positive thoughts... i'm trying that although today it's getting to me a bit! i wonder whether it's caused by stress, as last year was very stressful for me but i did have sinus op aswell. have you suffered either of these? good luck and demand that doctors take you seriously. lucy

            michaela_rees <michaela_rees@...> wrote:
            Hi lucy
            I have just got back from seeing a eye doctor, it was a long journey
            it is was 200 miles round journey, it was very stressfull.
            The doctor does not know why i am in so much pain, he hasn't seen
            others with this sort of on going pain before he see about 12 people
            a year with aidies pupil.
            Is your pain in your eye and forehead and cheek, and do you get it
            all the time and how long have you had aidies pupil.
            I feel very alone with this, i think now the pupil is the least of my
            worry's i just getting so down because of the constant pain and not
            noing why i am getting them and if i am going to have them for ever.
            Michaela




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            Lucy G xx


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          • michaela_rees
            Hi Lucy You say that you are having a MRI, haven t you had any scans before now, sorry that your feeling down today, i know how you feel its not nice that this
            Message 5 of 13 , Jul 7, 2003
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              Hi Lucy
              You say that you are having a MRI, haven't you had any scans before
              now, sorry that your feeling down today, i know how you feel its not
              nice that this has happened to all of us, i suppose we have to come
              to terms with our large pupil, which is difficult i know but we don't
              have much choice do we.
              I am trying to be positve but the pain is getting me down, the
              constant head and eye pain and i can hardly tolerate the light, thats
              with curtains closed. my eyes are realy sensitve to the light which
              is normal for aides pupil, but not this pain.
              I don't know what next to do realy, my doctor doesn't understand this
              condition, i have had a CAT scan not an MRI, there was nothing
              obvious showing.
              can you answer my questions Lucy because i need to find someone who
              has these symptoms, i don't if there migrains or cluster headaches i
              have never had them untill now and i am trying to find out whats
              causeing them, Do you have the constant headache and pain in your
              eyes? and does the light realy bother you like this, do you wear
              sunglasses out as well or can you cope with the light? or was it just
              bad in the beginning an has gradually improved for you.
              sorry for so many questions, but i just would like to know if anyone
              is this bad, because i feel concerned not knowing what is happening
              to me and that the doctors can't explain the pain, its not noing
              whats going to happen and the doctors not knowing because its so
              rare, its frustrating and that i might always be this bad. yes i was
              very stressed before it happened so it could of bought it on.
              take care of yourself and god bless
              Michaela xx
            • Rebecca Borchardt
              Bob, I think it s interesting that you should mention damage to the cheekbone. About 30 years ago I hit my face on the steering wheel really hard during an
              Message 6 of 13 , Jul 11, 2003
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                Bob,
                I think it's interesting that you should mention
                damage to the cheekbone. About 30 years ago I hit my
                face on the steering wheel really hard during an auto
                accident. Since that time, I have had a numbness on
                that cheek, with a slight "spider web" effect also. I
                mostly have the numbness though. That is the same eye
                that is affected by adies too. Thanks to you and
                everyone for the posts and e-mails even though I don't
                post too often. It's still great to read them and try
                to make some sense of it all.
                Becky
                --- Robert Batey <bobbikesandantiques@...>
                wrote:
                > Lucy,
                > The pain and numbness that you describe is generally
                > associated with damage to the knerves in the face ,
                > this can be as a result of a damaged cheekbone which
                > in turn damages the nerve ,
                > The after effect of this is numbness to the affected
                > side of the face also in the teeth on the same side.
                > This feels like spiders webb on your face and can be
                > very annoying
                > after time this is supposed to go away but i have
                > had the condition for 20 years and my face is still
                > numb .
                > It may be that your sinus problem has affected this
                > nerve causing the numbness that you desceibe
                >
                > Regards
                > Bob Batey
                >
                > lucy gleeson <lucygleeson1uk@...> wrote:
                > hi michaela,
                > i'm sorry to hear of your pain. yes, i have pain in
                > my cheek but its more of a feeling of numbness and
                > sometimes throbbing. my doctors also are not sure
                > why so i'm having an mri scan soon. i think maybe
                > everyone is different. it is so frustrating, i know.
                > some days i feel okay and others i feel really
                > annoyed with it! i phoned morefields eye hospital
                > and i was told in time the pupil will constrict but
                > that i'll always have the condition? maybe i'm vain
                > but the thought of having a dilated pupil forever is
                > the worst as it makes me feel a bit ugly! i've had
                > it 9 months and i feel it came on slowly before that
                > as my eyes went blurry about a year ago. i really
                > think that you should try and keep your chin up if
                > you can and have lots of positive thoughts... i'm
                > trying that although today it's getting to me a bit!
                > i wonder whether it's caused by stress, as last year
                > was very stressful for me but i did have sinus op
                > aswell. have you suffered either of these? good luck
                > and demand that doctors
                > take you seriously. lucy
                >
                > michaela_rees <michaela_rees@...> wrote:
                > Hi lucy
                > I have just got back from seeing a eye doctor, it
                > was a long journey
                > it is was 200 miles round journey, it was very
                > stressfull.
                > The doctor does not know why i am in so much pain,
                > he hasn't seen
                > others with this sort of on going pain before he see
                > about 12 people
                > a year with aidies pupil.
                > Is your pain in your eye and forehead and cheek, and
                > do you get it
                > all the time and how long have you had aidies pupil.
                > I feel very alone with this, i think now the pupil
                > is the least of my
                > worry's i just getting so down because of the
                > constant pain and not
                > noing why i am getting them and if i am going to
                > have them for ever.
                > Michaela
                >
                >
                >
                >
                > Your use of Yahoo! Groups is subject to the Yahoo!
                > Terms of Service.
                >
                >
                >
                >
                >
                >
                >
                >
                > Lucy G xx
                >
                >
                > ---------------------------------
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                > Your use of Yahoo! Groups is subject to the Yahoo!
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